Penned to commemorate Mental Health Awareness Day 2023.

Editor's note: This issues with the consent of the author. In keeping with the journal's desire to avoid ableist terminology, the title of this narrative has changed from "Have we turned a deaf ear to the whispers of loss? A forensic pathologist’s perspective" to "Have we become indifferent to the whispers of loss? A forensic pathologist’s perspective" as of 7th April, 2024.

With competing demands on attention, one option is to use the humanities and arts to 'hack' the attention of students. This is one experienced professor's journey to find balance, mindfulness and attention through the humanities and arts.

In case of an emergency, health insurance in Germany provides easy access to medical care in emergency departments. Over 100,000 people do not have health insurance for various reasons. They are repeatedly refused treatment in emergency rooms as their right to care outside of regular insurance is often unknown or ignored.

Background The involvement of pregnant women in vaccine clinical trials presents unique challenges for the informed consent process. We explored the expectations and experiences of the pregnant women, spouses/partners, health workers and stakeholders of the consent process during a Group B Streptococcus maternal vaccine trial. Methods We interviewed 56 participants including pregnant women taking part in the trial, women not in the trial, health workers handling the trial procedures, spouses, and community stakeholders. We conducted 13 in-depth interviews and focus group (...) discussions with 23 women in the trial, in-depth interviews with 5 spouses, and 5 women not in the trial, key informant interviews with 5 health workers and 5 other stakeholders were undertaken. Results Decision-making by a pregnant woman to join a trial was done in consultation with spouse, parents, siblings, or trusted health workers. Written study information was appreciated by all but they suggested the use of audio and visual presentation to enhance understanding. Women stressed the need to ensure that their male partners received study information before their pregnant partners joined a clinical trial. Confidentiality in research was emphasised differently by individual participants; while some emphasised it for self, others were keen to protect their family members from being exposed, for allowing them to be involved in research. However, others wanted their community participation to be acknowledged. Conclusion We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which informs not only the pregnant woman, but also her family about the research she is invited to engage in. (shrink)

Complementary and alternative medicine (CAM) is a rapidly growing industry, with millions worldwide seeking these treatments for various ailments. While many CAM therapies have shown promise in improving health outcomes, there are also ethical challenges associated with them. In this article, we explore some of the most pressing ethical issues in CAM, including informed consent, justice in accessibility, and evidence-based therapies. This survey provides a comprehensive overview of the ethical issues in CAM and offers practical guidance for health-care providers navigating (...) these complex issues. By understanding the ethical dilemmas in CAM, health-care providers can offer their patients safe and effective care while maintaining their professional and ethical obligations. (shrink)

As a rule, physicians’ reputation significantly influences public confidence in the medical profession. Unfortunately, the societal perception of physicians in contemporary Iran appears to be negatively impacted. Therefore, the present study aimed to analyze and elucidate the fundamental causes of this phenomenon.This qualitative study employed content analysis of semi-structured interviews conducted in 2022. The study population consisted of 6 physicians, 6 nurses and 12 patients in the the affiliated hospitals in Kerman University of Medical Sciences selected through purposive sampling. Extraction (...) of the main themes followed the Graneheim and Lundman approach, and data management was facilitated through MAXQDA 20. The study identified five themes encapsulating the causes for damage to physicians’ reputation: physicians' relationship with patients, physicians' relationship with the community, physicians' relationship with the medical profession, challenges within medical practice, and challenges related to medical education. Within these themes, a total of 38 subthemes emerged.The primary drivers that seem to damage physicians’ reputation include: non-effective communication, negative public attitudes toward certain physicians and medical centers due to malpractice, illegitimate relationships of physicians, gaps in physicians’ skills, insufficient education, and ethical lapses.It was concluded that several infrastructural elements negatively impact physicians' reputation. Consequently, it is recommended to monitor the professional behaviors, practices and relationships of physicians, while scrutinizing the medical education system. (shrink)

In the Holy Quran, a strong emphasis has been placed on the dignity of human beings. There are two verses in the Quran that discuss the differences between humans and other creatures. In this article, we have tried to interpret these two verses using free selection of virtues and goodness as the criterion for human dignity that was obtained in our previous research. In the verse of trust, unlike other creatures, man accepts a trust that informs us about his cruelty (...) and ignorance. However, if we consider this trust as freedom of choice, it can also imply injustice and ignorance alongside justice and wisdom for humans. In the verse of succession, angels tell God that human as vicegerent on earth leads to corruption and bloodshed. God does not deny this, but reminds the angels of the existence of pure ones. If we consider freely choosing goodness the differentiating factor between humans and other creatures the angels accurately refer to the possibility of creating corruption and bloodshed. However, they did not see the value of voluntary goodness compared to their own compulsory goodness.Therefore, by considering freely choosing goodness as the criterion for human dignity, these two verses can be easily interpreted. (shrink)

In Germany, the debate on preimplantation and prenatal testing is heavily influenced by the idea of an antagonism between prospective parents and their potential children. Underlying this antagonism is the assumption that prospective parents follow an ableist logic and do not regard the lives of children with a chronic illness as “worth living”. Taking the example of two rare genetic illnesses, Marfan Syndrome and Cystic Fibrosis, we investigate how persons who themselves are affected by these conditions view preimplantation or prenatal (...) testing for their condition in the context of reproductive decision-making. Our empirical research shows that chronically ill patients’ appreciation of their own life as a “life worth living” does not always translate into an unequivocal wish and readiness to give birth to a child that is affected by their condition as well and argue that taking their views into consideration adds an additional level of complexity to the debate. (shrink)

Greetings for the New Year and to a Happy Eid vacation! The year 2024 has just started and we have already celebrated quite a few events. New Year, Pohela Falgun, Women’s Day, and upcoming Pohela Boishakh. Again, The Bangladesh Bioethics Society arranged for an awesome seminal in Artificial Intelligence participated by renowned scientists from home and abroad. This seminar led by Professor Taslima Monsoor and organized by Dr. Shamima Lasker provides the participants with updated knowledge on Artificial Intelligence and Peer (...) Review. Well appreciated by all. (shrink)

Plagiarism defines as the act of using another person work or ideas without giving proper crediton, is a widespread problem in both academic and professional settings. This abstract investigates the many facets of plagiarism, including its numerous ramifications and the potential preventative steps. Plagiarism can manifest itself in a variety of ways, including the outright copying of content or the paraphrasing the text without correct or lack of referencing. Plagiarism brings about a wide range of consequences from academic penalties such (...) as failing grades to legal repercussions in professional contexts. In addition to this, it is detrimental to the principles of intellectual honesty and stifles the development of skills in critical thinking. Lack of awareness about citation procedures is one of the cause. Both employers and educational institutions have a responsibility to adopt preventative actions in order to solve this problem. implementation of instructional programs on appropriate ways of citation, the cultivation of a culture of academic integrity, and the utilization of systems that detect instances of plagiarism are the solution. (shrink)

Authorship is a significant aspect of scientific research publications, serving as a primary means of acknowledging the intellectual contributions of individuals and shaping career trajectories. However, determining authorship ethically and fairly in health science research remains a complex and multifaceted issue. This scoping review aims to explore the existing literature surrounding ethical considerations associated with authorship determination in health science research publications. A scoping review methodology was employed to search relevant databases (PubMed, MEDLINE, Scopus, Web of Science) for studies published (...) between 1989 and 2023. A total of 25 studies met the inclusion criteria. The findings revealed that ethical authorship practices in health science research are complex and multifaceted. This review emphasized how crucial it is to have precise rules and guidelines for deciding who is the author in academic journals, research institutes, and societies. The International Committee of Medical Journal Editors (ICMJE) has published several ethical principles to address the difficulties associated with authorship determination. Still, there are differences and disagreements in how these rules are interpreted and applied, which could present moral enigmas. The review also examines new ethical issues arising from multidisciplinary and collaborative research, such as the responsibilities of industry collaborations and funding, shared authorship, and acknowledging the contributions of other groups. Maintaining the integrity of health science research and encouraging responsible collaboration requires making sure that authorship determination is transparent, equitable, and accountable. According to the common census, key ethical considerations include: Authorship should be based on substantial contributions to the research project. Authors should be transparent about their contributions and accountable for the content of the publication. Ghost authorship, where individuals who have made significant contributions are not listed as authors, and gift authorship, where individuals who have not made significant contributions are included as authors, are unethical practices. Authors should disclose any conflicts of interest that could influence their judgment or interpretation of the research findings. (shrink)

Peer review has been adopted by most journals to evaluate the quality of submitted manuscripts, for which peer reviewers aim to provide a critical, independent and unbiased assessment. Peer review is ever evolving, with no single peer review system being perfect currently. This review article aims to give a broad overview of the various types of peer review, their advantages, pitfalls, and some related controversies.

The author (s) of a scientific article should have contributed to a research article in a meaningful and substantive way. A person who contributes to the research but whose name is excluded from the authors’ list is known as a ghost author. Whereas a guest author doesn’t contribute in a meaningful way to the research and preparation of the manuscript, however, appears on the author's byline. Often, guest authors are influential persons invited by the principal author to get favours later. (...) Gift authorship often involves mutual authorship among the articles of colleagues and vice-versa. The Inclusion of ghost authors, guests, or gift authors is common in the district town’s journal of Noakhali. This article was written to express my ten years of experience regarding the malpractices of authorship of a medical journal as an editor of a medical journal. It is a common phenomenon that after a few days of submitting an article to the editor’s office, the principal author requests to insert another author or to change the order of the author’s position. Members of the editorial board and reviewer of the article insert their names as authors violating the ICMJE (International Committee of Medical Journal Editors) guidelines. Course on authorship should be almost important to change the trend of our current culture in publishing articles, especially district medical college Journals. (shrink)

Bangladesh experiences unique challenges in publishing medical research in peer reviewed and high-impact international and national journals. These hurdles come from a combination of factors, including lack of healthcare professional to meet healthcare demand of large number of populations, limited research funding, inadequate research training, and a lack of mentorship for aspiring researchers. Additionally, the language barrier, particularly with English as the predominant language of scientific communication, poses a significant obstacle. Consequently, Bangladeshi researchers often struggle to meet the rigorous standards (...) and competitive landscape of international journals. TMSS Medical College Journal (TMCJ) has also been experiencing some challenges since it has been started in July 2013. Therefore, based on the TMCJ own experience, this study was designed to explore the challenges of medical journal publication. The aim of this study was to explore the challenges of medical journal publication of a medical college in Northern Bangladesh. This qualitative study was conducted in Bogura, Northern Bangladesh. Study participants were journal editors, advisors and editorial board members and authors of TMCJ. The journal and participants were selected purposively. An interview guideline was used to collect in-depth data from eleven providers. This study found lack of quality research papers for publishing each and every issue of the journal. Quality research paper includes well written methodology, analysis, findings, proper citation and language. One of the journal editors (KII-01) mentioned that “We are not receiving a sufficient number of manuscripts, and those we do receive are not publishable.” Associated factors of receiving less paper for publications were more emphasis given on serving patients and students, lack of interest in research, limited research funding, inadequate research training, and a lack of mentorship for young researchers. The potential interventions for removing barriers were enhance research funding, strengthen research training programs, promoting English language proficiency and foster mentorship opportunities. Lack of quality research papers is one of the major challenges for publishing medical journal. By overcoming these barriers, Bangladesh can enhance its contribution to the global body of medical knowledge and improve healthcare outcomes for its population. (shrink)

Lack of physical activity is one of the main cause of obesity. Currently, scientists proposed that teenagers and women are overweight or obese than men in Bangladesh. Furthermore, non-communicable diseases (NCDs) are becoming more prevalent in Bangladesh. By 2050, the illness burden of non-communicable diseases will have a significant impact on the health budget. To reduce non-communicable diseases, physical activity is one of the options. However, the lack of public facilities for physical activities in each community is a concern. According (...) to the Department of Military Estate Administration, Central Circle, DOHS (Defense Officers' Housing Scheme) has a total of 2966 plots and 396.6327 acres of area (640 acres =1 square mile) including 5 DOSH in Bangladesh. However, each DOHS has all the public facilities including structures streets, parks, walking paths, squares, gyms, cultural and sports grounds, walkways, waterfronts, lakes, mosques, cafeterias, public toilets, sitting areas for elderly or passersby, etc for physical activities specially for women, children, and the disabled people. Gulshan, Baridhara, Banani, and Dhanmondi areas are other good examples from Bangladesh where dwellers specially, women and children have facilities for physical activities. Sangmoo Kim, urban specialist said, “it is not over-ambitious thinking to have public facilities; it is a basic need for each city dweller for a healthy life”. This report aims to explore what are the policy drawbacks of the Government of Bangladesh not providing public facilities to perform physical activities in each area. (shrink)

Language, metaphysics and environmental ethics are specific and universal aspects of culture. Language and critical thinking are phenomenal means of communicating and rationalising environmental and metaphysical issues, among other existential concerns in general. This study argues that language and critical thinking are vehicles of metaphysics and environmental ethics. It also argues that the kind of metaphysics and environmental ethics inherent to a people determine their attitude towards the environment. As some scholars affirm in the literature, this is where continental philosophy (...) comes into environmentalism, because no philosophy is independent of culture and a larger number of environmental issues are peculiar to a place, while a few others obtain across places as universals. Thus, environmentalists look at environmental issues and metaphysical concerns from both specific and general contexts. It is realised that upon giving the issues at stake critical reflections, ethical principles are made or advanced using language constructively to express, disseminate and sustain them across ages. The study concludes that despite being neglected in metaphysical and environmental discourses, language plays a critical role in them, as (mis)representation of the two depends on how language is used to express and disseminate (un)critically constructed thoughts on environment and metaphysics. (shrink)

Pragmatism is a school of moral philosophy, and of contemporary in origin, comparing to the other schools of moral philosophy. It evaluates the action based on the practical applicability and relevance. Pragmatism can, therefore, be useful to make a law that govern the society contemporary and relevant for the constantly changing world. Biomedical laws in particular are needed to correspond to the changing standards and good practices in tandem with their advancements. This paper will assess from a pragmatic point of (...) view, the efficacy of the biomedical laws of Bangladesh. (shrink)

Situation ethics is aimed at regulating human actions and values based on the prevailing and forcible circumstances that may determine what should be valued as morals, Such “ethics of living” is necessary for the sake of the common or greater good. In most cases, the situations determine the survival of a greater number of persons, irrespective of the nature of causality that may be impeded. With situation ethics, Fletcher advocates that a human person is an agent of a conscious being. (...) These human actions in society cannot be free from moral implications when the sense of common goodness prevails. Adopting expository and descriptive methods of inquiry, the essay examines Fletcher’s situation ethics in relation to the possibilities of moral order in our world that has been bedeviled by erotic and erratic actions, ideologies, interests, and values without meaningful responsibility that can guarantee authentic and integral living. The paper highlights the moral thrusts for one’s actions and choices not to be judged or evaluated at face value, but to consider the possible rationality based on the situations in which actions are expressed and choices are made. The objective of the paper is hinged on the indispensability of one’s situation as a conscientious determinant of one’s moral responsibility and interest. The paper concludes that Fletcher’s situation ethics will remain ever relevant in the face of other ethical theories, principles, movementsor ideologies, as it can lead the human persons and their world to an enduring possibility of peace and tranquility, and then, guarantees the sustainability of moral order when the principle of love and care is generally adopted to regulate the contents of human freedom and conscience. (shrink)

Tuberculosis (TB) is both preventable and curable, yet it is the top killer disease in South Africa. In 2018, about 300,000 people in South Africa fell ill with TB and about 63,000 people died of TB. This demonstrates that the incidence of TB in South Africa is far greater than in other continents. This calls for a paradigm shift in the response to fighting the TB epidemic. Specifically, this necessitates promoting access to progressive treatment methods to fight the age-old disease (...) that is still affecting a greater fraction of the South African population. Treating TB with monotherapy has, in most instances, proven to be ineffective. The burden of the TB epidemic as witnessed in South Africa is a compelling reason for alternative treatment options such as human genome editing. The main purpose of this paper is to examine to what extent the legal and policy framework in South Africa enables the government to provide TB treatment to patients using human genome editing. The paper concludes that the right approach to accessing this technology is important because it provides a solid ground to demand access. (shrink)

Theocentrism is the position that places God at the centre of discourse; God is the Landlord and Manager of everything that exists. Analogous to other environmental theories such as anthropocentrism, zoocentrism, biocentrism, ecocentrism and eco-feminism, theocentrism posits that God owns the universe and so the best manual on how to come to term with the universe emanates from Him. God's commands are contained both in written scriptures and in oral traditions. While the former includes the Bible, Qur’an, Bhagavad Gita, amongst (...) others, the latter includes proverbs, myths, taboos, totems and rituals observed by different cultures across the globe. Unfortunately, a prevailing misinterpretation of scriptures considers theocentrism as nothing but ontological anthropocentrism, of which anthropocentric position in all its strands is the egoistic. It is the moribund environmentalist position humanity has ever devised. The argument of this paper is that the authentic theocentric position is anti-anthropocentric. This position is embedded implicitly or explicitly in the Scriptures if it can be carefully unraveled. Actually It continues thenceforth to establish that theocentric position is distinctly different from every other position. It is yet the most environmentally friendly position, without necessarily being at the expense of humans. (shrink)

This paper aims to appraise the implications of human organ commercialization and trafficking for third-world countries with special reference to Nigeria from the ethical and religious perspectives of utilitarianism, Kantianism, virtue ethics, moral necessity, imago dei (image of God), Karuna (self-compassion), Dharma (moral and religious obligations), sadaqatul jariyah (continuous charity), and eethaar (giving preference to others). The research utilizes both primary and secondary sources to derive its data. The findings show that selling, buying, and trafficking human organs invariably leads to (...) unethical behaviour and has serious negative health, ethical, and religious implications for human society in general and Nigerian society in particular. It posits that underdeveloped nations should intensify efforts on educational campaigns to raise awareness of the medical, ethical, and religious implications of human organ commercialization and trafficking. (shrink)

CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) as a gene editing tool is a precise and promising technology. By CRISPR technology, human gene can be introduced into the animal gene pool to develop chimera for human like cells/tissue. However, the long term effects of gene editing in human is unknown. After revisiting the state-of-the-art publications in this discipline, it appears that the possibility of development to full-term chimeric/non-human animal by CRISPR technic for xenotransplantation is a future reality. Concern over the (...) safety and ethical issues of gene modification remain for the xenotransplant recipient and the regulators. Countries like UK and the USA might find a leeway within which they would legally practice the research of development of the “non-human animal” to extract organs genetically compatible with the human body by hovering around the legal terminology. This article highlights the clinical, ethical, legal, and social issues of chimeric non-human animals for developing human-compatible organs. We have predicted how real and near the future is for gene modification and animal-human chimera formation for the purpose of xenotransplantation. (shrink)

Knowledge, attitude and practice (KAP) on healthcare professional's (HCP) ethical practice have been studied extensively in countries with developed economies. On the other hand studies in lower and middle-income countries (LMIC), especially in Sub-Saharan (SSA) countries are relatively sparse. The survey outlined in this article which was conducted in an SSA country tertiary care health facility in Ghana, was undertaken to explore the primary ethical knowledge and intuition, in a cohort of SSA HCP. The aim was to determine their baseline (...) ethical knowledge and sensitivity, deficits if any, in basic ethical concepts, and determine gaps in ethical knowledge. The information obtained from the study was to inform the possible future direction of ethics education, which currently has a relatively low uptake in SSA settings. The results indicated the respondents thought of ethical issues in the course of their work. However, if one is to go by reports of unethical behaviour among some HCP available in the public domain in Ghana, then there appears to be an issue of cognitive dissonance between HCP knowledge of ethics, and their actual everyday practice as HCP. (shrink)

Police abuses have been brought into the limelight recently due to the killing of George Floyd and many other African Americans in the United States. This has led to various protests in other countries, recalling decades of police brutality and abuses. The police exist to serve the community's good, ensure law and order, foster the protection of human lives and properties, and help prevent crime. When police officers deviate from the purpose for which they are set up, abuses arise. In (...) spite of the noble aims for which the police exist, there are police officers that have engaged in abusive practices, thus impeding their services. Police history seems to be rooted in a systematic culture of dehumanization and abuse. Police training and formation have privileged tactics and strategic training to the near negligence of moral character formation in police officers. This paper problematises this issue and argues through critical analytic and hermeneutic methods for the imperative of ethics in curbing police abuses. The paper finds that police abuses are global, and there is police impunity everywhere. It concludes, among other recommendations that police abuses can be restrained through ethical formation of police officers to respect the human dignity and rights of the citizens. (shrink)

With the increasing use of digital images, there is a growing demand for finer-tuned images that will improve the quality of what is being captured. Images captured by modern cameras are noisier, which reduces their quality. It is therefore imperative to reduce the amount of noise in these images, as well as the sharpness of the edges, corners, and other details of the image without reducing the image quality. Image noise is one of the main concerns on digital cameras. It (...) has been found that there are a variety of techniques that can be used to reduce noise in images, each of which has different advantages and disadvantages. However, there is still a challenge and concern associated with image denoising since, when noise is removed from an image, the image is likely to appear blurred. The purpose of this paper is to discuss the characteristics of different types of noise in an image, as well as some of the different types of denoising techniques for the right way capture. The objective of this paper is to introduce various denoising techniques that can remove noise from images while maintaining a high level of image quality. Our study also utilized bilateral and nonlocal means filtering techniques, as well as total variability denoising to demonstrate the denoising in a noisy image. The numerical data in pixels in an image is typically changed by digital image filters (convolution kernels). Filters can cause artifacts in an image if they are not used carefully, leading to a misinterpretation of the data. We have ethically applied the filtering techniques in our experiment. (shrink)

It is an indisputable fact that literature reserves a significant place in research ethics. However, its place in research ethics is neglected by most of the scholars concerned with the scholastic subject matter of research ethics. This study aims at exploring the place of literature in research ethics. Primary data were obtained from observation, and library and internet data sources. Content analysis and qualitative approach are employed in the analysis of data. The work is grounded by the functionalist theory, which (...) explains the functional connectivity between literature and research ethics, as societal systems that are interdependent. The analysis reveals that literature plays crucial roles in instruction, information, education, exerting influence, construction of realities and ethics, execution, preservation and transmission of research ethics, instilling creative and critical skills in researchers, research authorities and participants, and causing readership, and new world orders in research sphere. The study concludes that literature is deeply involved in all that concerns research ethics. It recommends sustained right use of literature for constructing, disseminating, executing, sustaining and reforming research ethics across ages and societies. (shrink)

It is quite worrisome that syntactic norms and values, which ideally guide the arrangement of words, phrases, clauses and other lexical categories, are not strictly upheld and followed by many researchers and even research bodies. That implies violating some basics of research ethics. This study rises to make a critical exposition of syntactic rules in research ethics, which are often violated. Relying on observation and secondary data, the study demonstrates that poor knowledge and negligence of syntactic rules largely accounts for (...) the violation of syntactic rules in research works by researchers and many concerned research bodies. It shows that unacceptable grammatical structures have grave implications for the overall given research work. Also, phrase structure rules correlate with interpretative rules, just as syntax and semantics also correlate. The study concludes that since language is rule-governed, the violation of syntactic rules in research work implies the violation of language rules and research ethics. The study is anchored on the syntactic theory of Universal Grammar, which explains how standard syntactic rules and research ethics are universal, and must be followed in order to have acceptable and correct sentences and research. (shrink)

The patient-physician relationship is one of the most prevalent and topical issues in bioethics. Using various ethical theories and concepts, bioethicists and philosophers in general have offered similar and contrasting arguments on how a physician ought to treat and relate with his patient. The aim of this paper is to centre on William David Ross’s notion of “Prima Facie Duties” and its implications for human actions, especially, in the discourse on patient-physician relationship. This paper attempts to resolve the problem of (...) the patient-physician relationship in relation to truth-telling in medical professions using Ross’s prima facie duties. Hence, this paper looks beyond the deficiencies of ideal utilitarianism and the stringency of Kant absolutism. (shrink)

Like research itself, research ethics involves and as well requires language use with all levels of linguistics analysis. Pragmatics is one of the levels used for (re)presenting research activities and ethics. Regrettably in the course of representing research activities and ethics pragmatically, some misrepresentations arise. Leaning on some secondary sources of data, this study seeks to describe how context impacts on research ethics. The study is anchored on Grice Conversational Theory of Implicature, which highlights the implication of violating research ethics (...) and what context implies in research. The analysis demonstrates that research ethics is both context-specific and general. Next, context is proven to be the base of pragmatic misrepresentation in research ethics. It also shows that pragmatic misrepresentations amount to ethical violations in research ethics and beyond. The study concludes that there is a correlation between research ethics and pragmatics, made manifest basically by context. (shrink)

Ethical scientific publication is of growing importance due to an array of reasons. The responsibilities of a researcher have grown manifold with robust laws to protect human rights from spurious research, and rising awareness of ethics in conceiving, conducting and reporting research. To report a good research, an author must be aware of ethical publication practices. In this paper, we review the ethical issues involved with scientific publication. Literature regarding ethical publication was reviewed in leading search engine PubMed with the (...) following search terms and their combinations: ethics, publication, scientific publication. Twenty-six papers were selected based on their relevancy. There is a need to raise awareness about the ethical issues in publishing especially at a student level in academics so that as they become researchers they already are aware of publication ethics. The University Grants Commission has developed a course in this regard which should be well promoted and compulsory since graduate studies. This paper highlights the nuances of ethical publishing that need to be taken care of such as data fabrication, plagiarism, conflict of interest and such commonly mistaken aspects that need to be addressed seriously while reporting research. (shrink)

Ethics Committees (ECs) are endowed with the responsibility of ensuring ethical conduct of biomedical research and human research participants’ protection. Although mandating its registration with central regulatory agency/agencies like Department of Health Research or Central Drugs Standard Control Organisation helps to improve its quality of functioning, further progress in achieving highest standards of ethical review is facilitated by undergoing various recognition/accreditation programs. One such is the Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) recognition program, which was established under (...) the World Health Organization–Tropical Disease Research (WHO-TDR) as a public-private partnership project in the year 2005. An EC is recognized by SIDCER after assessing five standards namely its structure and composition; adherence to specific policies; completeness of its review process; after review process; and documentation and archiving. This review describes the experiences of an EC of Sri Manakula Vinayagar Medical College and Hospital (SMVMCH), on the path to receiving SIDCER recognition and way beyond. (shrink)

The outbreak of COVID-19 might not have a homogeneous dispersion of its own adverse consequences. Adolescents in the least developed country including Bangladesh who are already underprivileged or fragile predicted to suffer substantial damage and mental health disorders during COVID-19. Adolescents and their families might suffer significantly from a variety of mental health pressures like mood disorders, anxiety, stress, loneliness, depression, and suicidal tendency for children. A systemic literature review throughout PubMed, Google Scholar, and Medline was done to evaluate the (...) research, which covered the years between 2020 and 2022. This manuscript emphasizes how COVID-19 harms children’s mental health. Finally, suggestions for parental care, and mental health care for young children are given. Future studies will concentrate on how well age-appropriate, evidence-based mental health services work. (shrink)

The use of vaccines and vaccination programs for Covid-19 became a widely prevalent practice all over the globe to curb the spread of the virus and put a check on the ongoing pandemic. Implementation of Covid-19 certificates or ‘vaccine passports’ (also known as ‘immunization passports’ or ‘digital health passes') is another step in the same direction to control the spread of the virus by ensuring a method to slowly ease back into the regular ways of living and traveling. These certificates (...) are also believed to promote vaccination amongst the public and ensure a higher vaccination rate and achievement of herd immunity. While it may seem like an excellent initiative to control the virus, various legal and ethical issues arise. We are familiar with the direct conflict and controversy around anti-vaxxers (people who refuse to get vaccinated), and the agenda furthered by the government to achieve public health and contain the spread of the virus. In addition, the usage of vaccine certificates is also an attention-worthy area that gives rise to several ethical concerns that might be overlooked as a second-order consequence of vaccination programs. This paper aims to expose ethical issues arising from using vaccine certificates and suggestions to deal with such issues mindfully and responsibly. (shrink)

This paper explores Africa’s response to the COVID-19 pandemic and some ethical principles that can be used to address the problem of COVID-19. The COVID-19 pandemic affects all human beings in the world, but not equally. Developing countries are more vulnerable to the COVID-19 crisis. Humanity should act collectively to deal with this crisis. It should search for both indigenous and modern medicines to combat the COVID-19 pandemic. Besides science and technology, humanity should adopt ethical principles, such as the precautionary (...) principle, solidarity, principles of respect for persons, beneficence, nonmaleficence, reciprocity, justice, proportionality, accountability, transparency, and communalism to effectively combat COVID-19. This paper further suggests that pharmaceutical companies should prioritize the well-being of the people, rather than trying to make unnecessary and unreasonable profits in the global fight against the COVID-19 pandemic. (shrink)

COVID-19 patients with hospital delirium exhibit high level of metabolic problems (low level of sodium concentration) and severe anxieties of psychotic problems were observed during the COVID-19 pandemic period. In this qualitative study, researcher explored, the perceptions of medical professionals such as, doctors, nurses, laboratory technicians, microbiologists, and other healthcare workers regarding delirium during COVID-19. Interviews and field notes were collected from the Karur Government Medical College Hospital, Karur, Tamil Nadu, India. Most of the professionals observed that the ICU psychosis (...) affected patients with dementia problems in the COVID-19 pandemic. The patients were affected by delirium with COVID-19 infection is higher prevalence than delirium without COVID-19 infection. Further, the patients exhibited a number of other diseases such as diabetes, hypertension and other ailments had correlation with delirium diseases. Denying some services to the delirium patients would be an infringement of their basic human rights. This research report witnessed by the ethical value of medical professionals in Karur Government Medical College Hospital, India, during the COVID-19 pandemic period. (shrink)

Next issues of Bangladesh Journal of Bioethics (BJBio) are on Police ethics, COVID 19 and ethics, and Research ethics, scheduled to be published from July, November 2022, and March 2023. The journal will publish original research papers, reviews, short communications, and case reports to encourage critical engagement with these topics of bioethics. There is no submission fee, no article processing fee, and no publication fee. Pls see the link: https://www.facebook.com/events/2074607736041729.

The gross violation of environmental ethics implies the outright destruction of the environment, which in turn poses severe threat to humanity. This study aims at highlighting the effects of Oruka’s punishment abolition on environmental ethics. It argues that Oruka’s punishment abolition, if practiced, is a challenge to environmental ethics, since breaching environmental laws would become the order of the day. It will be so because it is to avert the wrath of the law (i.e. punishment) that environmental laws, which constitute (...) environmental ethics, are kept. In view of the pitfalls of Oruka’s theory of punishment, this study faults Oruka for demanding the abolition of punishment. Contrarily, it insists that punishment should never be abolished in any human society to avoid anarchy, crime prevalence and recurrence, and the destruction of human environment. (shrink)

The pantheistic view of nature enshrined in African traditional religious beliefs and thought systems has propelled a myriad of African scholars to assume that the environmental ethical position of ATR on human-nature relations is environment-centered. This is a result of the ineptitude of some scholars to critically analyze the complexity involved in the discourse on human-nature relations in traditional African religious beliefs, borne out of an ethnocentric mindset to eulogize ATR. An in-depth understanding of African traditional religious environmental ethics requires (...) a full grasp of African ontology. On this note, to clear this age-old misconception about Traditional African notions on human-nature relations, this research aims at simplifying the complexity or ambiguity surrounding the discourse and brings to the fore the anthropocentric view of African Traditional Religion and environmental ethics on human-nature relations. The paper argues vehemently that African religious belief in human-nature relations is absolutely anthropocentric. (shrink)

Recent years’ rapid urbanization and then rural to urban migration have created increasing demands of bricks usages in Bangladesh. However, brick industry has been largely using inefficient, dirty technology and burns woods-coal. It injects huge volume of effluent gases namely CO2, SO2, NOx, CH4, CO etc., in atmosphere. Governments, particularly developing countries have lost the ability to effectively regulate environmental issues, while at the same time corporations have gained unprecedented influence over many facets of society. On this aspect, Bangladesh is (...) no exception. For policy guidance underpinning ethical grounds on the issue, this study analyzes the basic issues of CO2 emission from brickfields in terms of marginal damage (MD) analysis. Findings show that the marginal social costs are higher than marginal private (producer of bricks) costs where brickfields are benefiting with the expense of Bangladeshi society as a whole. As time passes by, rises of brick-prices have been causing upward trends of welfare losses where producers’ surpluses are dominating in the total surplus. This economic situation has been causing higher deadweight loss year after year. Addressing the issues, national strategies and policy actions underpinning bioethical grounds are needed. Reforestation efforts can be achieved in multi-faucets: brick-fields’ charity, government policies on planting trees and policies on motivational efforts inspiring citizens of Bangladesh. Bioethics responsibility trainings in multi-faucets are needed where government’s roles in designing program(s) can be instrumental. Motivational policy can be: i) inspiring celebration individual’s “Birthday, having 1st child in family and Event of marriage” by planting trees, ii) forcing to utilize green tech in brick kilns and iii) policies conducting academic research where financial supports are in need. (shrink)

This research paper attempts to explicate the potential and significance of ecological solidarity in the contemporary world. Through the works of Allan Schnaiberg, an American sociologist, the paper aims to analyze the interfering factors such as power structures, role of individuals, role of state in environmental awareness and preservation. As the works on ecological solidarity are minimal or are available only through a few state policies, the paper experiences limitations of resources. Despite limitation, the study constructs arguments derived from the (...) data and information provided by sources that focus on solidarity, awareness, and compassion towards environment. (shrink)

The Bangladesh Journal of Bioethics (BJBio) is welcoming submissions for issues on a number of topics in bioethics, scheduled to be published from early 2022 through early 2023. The journal will publish original research papers, reviews, short communications, and case reports to encourage critical engagement with these topics, and to promote scientific responsibility and international and interdisciplinary exchange of views and ideas. There is no submission fee, no article processing fee, and no publication fee. Submissions are subject to double-blind peer (...) review. The journal is widely indexed and disseminated internationally, offering authors high visibility for their work and access to a broad readership. Pls see the link: https://www.facebook.com/events/2074607736041729. (shrink)

We are living in a corona pandemic environment. Despite this, we are going ahead. Let us hope for a coming future. The current issue of BJB is designed by the articles on the ethical issues in the environment. Following is a brief sum-up of each paper.

The civilization of the world has become a threat and distorted environmental integrity in the 20th century. Therefore, environmental ethics is currently getting important in academic considerations. Various public and private institutions such as universities and research centers output throughout the world are now paying attention and seriousness to the environment. This paper focuses on what mankind ought to do regarding the cross-cuttingness of environmental problems.

This paper shows how man's activity negatively impacts the environment and humanity. This work emphasizes that human beings should reduce activities in the environment to avoid boomeranging effects. Thus, man must realize that the environment provides man with naturalness, aesthetic enjoyment, and spiritual significance value. As such, man should cultivate an attitude of love for nature (environment), reverence for nature (environment), and limit the use of nature (environment) for the future generation. The methods employed in this work are critical analysis, (...) logical evaluation, argumentation, and prescription. (shrink)

Dear Members of Bangladesh Journal of Bioethics Greetings! Hope all of you are keeping safe and having vaccines in this pandemic situation. Many have been affected either directly or through the sufferings of family and friends. In spite of all these we are going ahead. Let us all hope and try for a bright future. This issue of BJB looks into the relationship between Bioethics and terminally ill patients.

Dear Members of Bangladesh Journal of Bioethics, Greetings! Hope you are going forward and still hoping to defeat successfully the corona pandemic. This issue of BJB looks up the bioethics issues on the beginning of life. Hope you enjoy reading.

The church in Nigeria does not seem to know the trend in food production where genetically modified food has taken hold of global agriculture. Pastors and Priests seem blank on what is happening, either because of ignorance, carelessness, or due to lack of biblical basis on which to teach or formulate policy. Despite these, the Christian populace in Nigeria is not left out in the onslaught of genetically modified organisms and foods as they continue to consume these products. This paper (...) ethically appraises the role of the church in raising awareness and educating her adherents on the issues surrounding genetically modified food in Nigeria. Following qualitative and Christian ethical approaches, the paper argues that Christian churches in Nigeria should establish a committee that will study and advise them on the harmless foods for consumption in Nigeria. (shrink)

With the generous grants of Social Science Research Council (SSRC), Planning Division, Ministry of Planning, Bangladesh a full time training workshop Long Course on Advanced Research Methodology and SPSS/STATA was started on 13 Oct-1 Dec, 2021 from 8 am - 4 pm for the Post graduate Medical Students of National Institute of Neurosciences & Hospital (NINS) at NINS auditorium. Programme was conducted by Bioethics Society (BBS). Mohammad Jainul Bari, Secretary, Planning Division, Ministry of Planning, Government of People Republic of Bangladesh (...) was present at the Inauguration programme as Chief Guest. Prof Dr Mohammad Mostofa Zaman, Advisor Research & Publication and Focal Point, Gender, Equity & Rights, World Health Organization; MD Mosharraf Hossain, Additional Secretary, Planning Division, Ministry of Planning, Government of People Republic of Bangladesh; Kamruzzaman, Deputy Director, Social Science Research Council (SSRC), Ministry of Planning, Government of People Republic of Bangladesh were also present as Special Guest. Mr Sakhawat Hossain, Research Officer, SSRC, Ministry of Planning, Government of People Republic of Bangladesh was also present in the program. Prof. (Dr.) Quazi Deen Mohammed, Professor of Neurology & Director, National Institute of Neurosciences chaired the Opening ceremony as a local coordinator. Prof Dr Md Badrul Alam Mondal, Joint Director & Professor of Neurology, Institute of Neurosciences (NINS) CO-Chaired the session. (shrink)

With the colossal strides recorded in the arena of Genetic Engineering, conviction in Orí, among traditional Yorùbás, as the bearer of an individual’s destiny and life course among the Yorùbá wanes. Through critical analysis and hermeneutical interpretation, the present study scrutinizes the relation between physiognomy and destiny in traditional Yorùbá idea of Orí. The cumulative traditional Yorùbá allegorical account depicts Òrìṣàńlá as the primordial divinity casting Ara (human body) from clay or sand; Olódùmarè, the Higher God, providing Ẹ̀mí (life-force) and (...) Àjàlá, another primordial divinity, the maker of Orí (destiny) which must be acquired pre-natally. Hence, it seems on first showing, that it is impossible for the Yorùbá, as portrayed in the allegory, to believe in Orí, on one hand and genetically modified individuals on the other hand. As a consequence, this paper proposes to reconstruct a type of Orí acquisition that is consistent with Yorùbá thought system and loyal to the overwhelming and undeniable achievements of Genetic Engineering. (shrink)

Human embryonic moral status in the embryo debate in the Indian religious school of thoughts is a challenging issue. The paper tries to figure out whether ontological status implies moral status of embryo. Consciousness is an important determinant of animation of human embryo. In this paper an attempt had been made to understand the concept of man and soul in the Hindu philosophical thought. In the process we would also make a critical review of embryology in the Hindu philosophical thought. (...) The study would adopt a conceptual elucidation of morality. The paper made an elaborative study of Puruṣa as found in the Saṃkhya Philosophy and the study of consciousness and animation would try to resolve the related question, when does life begin to have that value? Embryo-protectionist regards embryos as a potential person. The Gita says the human person is individual self-called āttmā, whose nature is of pure consciousness, Brahman/Puruṣa. Consciousness constitutes the essentiality of individual Self. Human embryo developments are elaborately studied in the Yajñavalkya Smṛti, Garbha Upaniṣad, and Suśruta Saṃhitā. The self that remain latent in the embryo gets impetus with the association of consciousness until then it cannot be a human personality. In Hinduism sanctity of life gets combined with autonomy and self-determination. The sanctity of life applies both to the fetus as well as to the overall welfare of the society. The embryo being in an interim stage and the soul not being destroyed upon body annihilation, it may be claimed that since destruction or annihilation of the physical form does not destroy the soul, beneficial embryo research should thus not be abhorrent. The Hindu ethics as examined here precludes the consideration of the situation at hand, and causing the least harm and work according to one’s dharma. (shrink)

Applied Research Methodology SPSS/STATA BBS has completed “ Applied Research Methodology SPSS/STATA”, organized by Bangladesh Bioethics Society in cooperation with National Institute of Neurosciences (NINS) on 15 March 2021 at 11 am at NINS auditorium, Agargoan, Dhaka. Mohammad Jainul Bari, Secretary, Planning Division, Ministry of Planning, Government of People Republic of Bangladesh chaired as was the Chief Guest. Prof Dr Mohammad Mostofa Zaman, Advisor Research & Publication, World Health Organization Focal Point, Gender, Equity & Rights of WHO and Md Mosarraf (...) Hossain, Additional Secretary, Planning Division, Ministry of Planning, People’s Republic of Bangladesh were the special Guest respectively. Prof. (Dr.) Quazi Deen Mohammed, Professor of Neurology & Director, National Institute of Neurosciences Chaired the session. This programme was funded by Social Science Research Council, Planning Division, Ministry of Planning, Government of the People’s Republic of Bangladesh. (shrink)

The issues and questions generated by euthanasia have informed divergent views among scholars. Some uphold the sanctity of human life and oppose euthanasia regardless of the situation. Some contend rational and morally sound inferences for euthanasia. It seems the debates vitiate the consent and ‘unique’ situation of peoples who find themselves seeking the plausibility and applicability of Physician Assisted Suicide (PAS). Through the method of philosophical analysis, this research seeks to argue if euthanasia can be morally permissible on some grounds. (...) This research employs Robert Young’s outlook on the discourse in order to justify grounds upon which active euthanasia and physician assisted suicide may be permissible. What are these grounds? Are these grounds morally permissible? Does Young’s submission take into consideration the autonomy of the patient and beneficence of the physician? These are the primary questions that this research seeks to engage. (shrink)

Objectives: When the illness becomes acute, the patient will be burdened physically and psychosocially. Three factors could affect their dignity: illness-related dignity, dignity conserving repertoire, and social dignity inventory. This research aims to describe the dignity shifting experiences of the terminally-ill patients based on their families’ opinions. If the health care workers aware and realize this shifting, it will help them to give care for the terminal ill patients. Methods: This research was a phenomenological study as a part of bigger (...) study carried out in a Catholic hospital in Indonesia. The subjects for this research were the families of terminally ill patients. They were interviewed to know what kind of shifting happened in their families’ members. Result: Being sick and hospitalized was a shift of dignity. According to the families interviewed, being patients in the hospital everybody that they knew was visiting and watching them laying on the bed. Patients expressed their feelings that they were “such a performer”; not strong enough and ready to welcome guests because of the condition, or they felt not comfortable and always wanted to go home. Other patient felt that she was very dependent and not used to be served by nurses in a hospital. The patient was strong before, but during the illness, she became and was so weak. In another case, one patient somehow kept her dignity by telling her sister to continue running the business. Every day she told her sister to do the job properly, like a business as usual, as if she did not want to loose her dignity. Conclusions: There are various stages and shifting happening during the illness. Some patients felt that the illness weaken their physical body and social relations. Some others tried to conserve their mental condition after the illness. The healthcare workers should be aware, paid attention and be trained to this dignity shifting. The care needs to be adapted and given considerably according to the patients. (shrink)

Genomic testing in prenatal care is rapidly advancing and it is now possible to obtain an entire fetal genome via a blood test administered in early pregnancy. In the pursuit of reproductive autonomy, more tests are being offered to more people, for an ever-increasing range of indications. Health professionals who provide pregnancy care are at the vanguard of prenatal testing, yet their views on the impact of technology advancements remain under-explored. Qualitative interviews with Australian healthcare professionals revealed that they value (...) prenatal testing for its information-giving potential. However, the rationale underpinning testing reveals a tension between professionals’ desire for certainty and patients’ expectation that they will be reassured. Coupled with the greater salience of genomic information over other forms of knowledge in prenatal care, we suggest that the unchecked pursuit of information by way of genomic technologies in prenatal testing may paradoxically constrain reproductive autonomy in practice. (shrink)

This study explores the epidemiological landscape of musculoskeletal diseases in Kazakhstan over the past decade, emphasizing the impact on public health and the need for individualized medical approaches. Analyzing a 10-year dataset from 2011 to 2020, sourced from the Ministry of Health, the study reveals a significant increase in overall morbidity, with the highest incidence shifting from the East Kazakhstan region a decade ago to Astana city in 2020. Despite a temporary decline during the initial COVID-19 pandemic, morbidity rose consistently (...) across all southern regions. Detailed regional analyses highlight the Zhambyl region as having the highest incidence in 2020, with distinct patterns observed among different age groups and genders. The findings underscore the importance of targeted strategies to mitigate morbidity and enhance musculoskeletal health, providing a valuable foundation for future public health initiatives. (shrink)

ACADEMIC VISIT TO JAPAN: MEDICAL WRITING AND PUBLICATION ETHICS.

Introduction. The coronavirus disease (COVID-19) pandemic has the potential to impact disease activity and psychological well-being in people with rheumatic diseases. This study aimed to compare ankylosing spondylitis (AS) patients with and without COVID-19 history in terms of treatment, disease control, quality of life and psychological status by providing a cross-sectional look at treatment, disease control, quality of life and psychological status in patients with AS during the COVID-19 pandemic. Methods. The study included 74 AS patients, in two groups based (...) on COVID-19 history. Demographic data and clinical characteristics were recorded. Treatment, disease control, functional status, and quality of life were evaluated using Bath Ankylosing Spondylitis Disease Activity Index, Bath Ankylosing Spondylitis Functional Index (BASFI), and impact of COVID-19 on quality-of-life scales. Psychological status was assessed using the Beck Depression Inventory, Beck Hopelessness Scale, and COVID-19 anxiety scale. Results. Of the 74 patients diagnosed with AS, 44 were female and 34 were male. The mean age was 47.3 years. In total, 35 patients (47.3%) had COVID-19. We found that the group without COVID-19 had significantly higher levels of hypothyroidism than the other group (p = 0.008). The BASFI value was significantly higher in the COVID-19 group (p = 0.031). The group with COVID-19 had a substantially higher rate of continuing non-anti-rheumatic drug use than the other group (p = 0.02). Conclusion. During COVID-19 pandemic period, the majority of patients continued their medication, so treatment and disease control were not negatively affected. Having COVID-19 did not cause a significant difference psychologically. (shrink)

Background. Psoriasis is a concerned public health problem across the world. Previous studies have often concentrated on the disease burden globally and in MENA areas. However, the epidemiological patterns and burden of psoriasis in the US are still lacking. This study aims to assess the incidence, prevalence, and DALYs of RA in the US between 1990 and 2019, with a pattern prediction for the next ten years addressing the lack of comprehensive research on the disease's epidemiological patterns. Moreover, correlations between (...) incidence, prevalence, DALYs, and SDI will be examined. Methods. The incidence, prevalence, and DALYs in the US were investigated by age, gender, SDI, and state using the data from Global burden disease (GBD). All estimates were generated using age-standardized rates per 100,000 individuals and rate change, with 95% Uncertainty Intervals (UIs). Pearson correlation was used to analyze the relationships between incidence, prevalence, DALYs, and SDI. The forecast analysis was performed using R software, utilizing some of its packages. Results. The US experienced a decrease in psoriasis prevalence and incidence since 1990, with females experiencing a slightly higher decrease than men. However, US DALY rates have decreased, with males and females experiencing similar decreases. New York and Massachusetts had the highest rates, while Wyoming had the lowest. A significant positive correlation (modest power) was found between SDI and incidence, prevalence, and DALYs. The forecasting period (2025-2035) indicates that psoriasis incidence remains steady among young people of both ages, with a minor increase in elderly people. In terms of DALYs, both age groups expected a progressive decline in psoriasis. Conclusion. Psoriasis is still a major cause of health burden in the US with considerable differences extending between states. Updating accessible health data is required to provide more precise guidelines for the early identification and treatment of psoriasis. (shrink)

Introduction: Diffusion-weighted imaging [DWI] plays a significant role in distinguishing liver lesions. This study focuses on the significance of apparent diffusion coefficient [ADC] values in distinguishing between benign and malignant liver lesions. Methods: A retrospective evaluation was conducted on patients who underwent liver MRI examinations at our clinic, and 378 liver lesions were found. The study comprised 141 women, 80 men, and 221 patients with liver lesions. The measured ADC values between benign and malignant lesions were compared. In addition, the (...) lesion ADC value/CSF ADC value ratio was measured, and the relative ADC value was named. Results: 118 hemangiomas, 59 simple cysts, 67 hydatid cysts, 3 focal nodular hyperplasias, 9 abscesses, 28 hepatocellular carcinomas, 88 metastases, and 6 lymphomas were evaluated. Simple cysts and hemangiomas had the most elevated ADC values compared to all other liver lesions. The ADC values for liver lesions classified as benign had a mean of 2.10 x 10-3 mm2/s, while malignant ones had a lower mean of 0.75 x 10-3 mm2/s. The ADC values of malignant liver lesions were lower compared to the benign lesions. Conclusion: Using DWI combined with ADC values could be valuable in discerning between benign and malignant liver lesions. Besides, relative ADC values may also contribute to more objective results. (shrink)

The presence of artificial intelligence in healthcare is growing, helping in diagnosis and decision making. However, its application raises doubts, mostly related to ethics. This study aimed to identify its uses in health and its bioethical implications from a systematic literature review using the PRISMA guidelines. The ScienceDirect and Scopus databases were searched, using the descriptors “artificial intelligence,” “bioethics” and “health.” Works in English, published between 2017 and 2021 were considered, resulting in 102 articles found and, after applying the established (...) criteria, 11 were selected. The studies reported on the bioethical principles of beneficence, non-maleficence, autonomy and justice, adding an element, explainability. Relationships were found between artificial intelligence in health and unpredictability, predictability, trust, physicians’ role, systems development, privacy, data security, financial and social aspects. Developers, healthcare professionals and patients must maximize the benefits and limit the risks of tools that use this technology. (shrink)

How do white nationalists use genetic ancestry tests? This article provides a qualitative analysis of posts from Stormfront, a white nationalist message board, to understand how white nationalists use genetic ancestry tests to advance ideological claims about the threat of genetic admixture. Starting in 2004, members of this message board began discussing the promises and pitfalls of using genetic ancestry tests to prove their whiteness. Using Goffman’s framework of stigma and impression management, we explore how they manage undesirable test results (...) and genetic stigma amongst themselves – when they take genetic tests and discover they are partially non-white. Finally, this article looks at how they simultaneously deploy exclusionary or inclusionary strategies that challenge past concepts of whiteness built on the one-drop rule. Pragmatic concerns often drive their strategic positioning when confronted with undesirable test results, as they are aware that too strict exclusionary policies may impede the group’s demographical survival. (shrink)

This study investigates prospective fathers’ reaction to epigenetics and its implications for heredity. Mounting scientific evidence that epigenetic changes transmit through fathers, not just mothers, makes it important to learn how men regard their inheritance conceptually and its relevance for their behavior. This study features in-depth interviews with 31 prospective fathers in Canada. About one-third of respondents had heard of epigenetics, but only one had substantial knowledge. After a non-technical explanation, virtually all found epigenetics plausible, though to varying degrees and (...) with varying mental models of how epigenetic inheritance would work. Nearly all expressed a strong desire to follow whatever behaviors would improve the health of their future children, even lifestyle changes, thus re-aligning responsible fatherhood with new scientific findings. This demonstrates the new concept of genetic subjectivity: socially conditioned attitudes and normative agency based on genetic science. Implications for the ontology of gendered inheritance and social relations are discussed. (shrink)

Photo by Sean Pollock on Unsplash ABSTRACT Bioethics and Corporate Social Responsibility (CSR) were born out of similar concerns, such as the reaction to scandal and the restraint of irresponsible actions by individuals and organizations. However, these fields of knowledge are seldom explored together. This article attempts to explain the motives behind the gap between bioethics and CSR, while arguing that their shared agenda – combined with their contrasting principles and goals – suggests there is potential for fruitful dialogue that (...) enables the actualization of bioethical agendas and provides a direction for CSR in health-related organizations. INTRODUCTION Bioethics and Corporate Social Responsibility (CSR) seem to be cut from the same cloth: the concern for human rights and the response to scandal. Both are tools for the governance of organizations, shaping how power flows and decisions are made. They have taken the shape of specialized committees, means of stakeholder inclusion at deliberative forums, compliance programs, and internal processes. It should be surprising, then, that these two fields of study and practice have developed separately, only recently re-approaching one another. There have been displays of this reconnection both in academic and corporate spaces, with bioethics surfacing as part of the discourse of CSR and compliance initiatives. However, this is still a relatively timid effort. Even though the bioethics-CSR divide presents mostly reasonable explanations for this difficult relationship between the disciplines, current proposals suggest there is much to be gained from a stronger relationship between them. This article explores the common history of bioethics and corporate social responsibility and identifies their common features and differences. It then explores the dispute of jurisdictions due to professional and academic “pedigree” and incompatibilities in the ideological and teleological spheres as possible causes for the divide. The discussion turns to paths for improving the reflexivity of both disciplines and, therefore, their openness to mutual contributions. I. Cut Out of the Same Cloth The earliest record of the word “bioethics” dates back to 1927 as a term that designates one’s ethical responsibility toward not only human beings but other lifeforms as well, such as animals and plants.[1] Based on Kantian ethics, the term was coined as a response to the great prestige science held at its time. It remained largely forgotten until the 1970s, when it resurfaced in the United States[2] as the body of knowledge that can be employed to ensure the responsible pursuit and application of science. The resurgence was prompted by a response to widespread irresponsible attitudes toward science and grounded in a pluralistic perspective of morality.[3] In the second half of the twentieth century, states and the international community assumed the duty to protect human rights, and bioethics became a venue for discussing rights.[4] There is both a semantic gap and a contextual gap between these two iterations, with some of them already being established. Corporate social responsibility is often attributed to the Berle-Dodd debate. The discussion was characterized by diverging views on the extent of the responsibility of managers.[5] It was later settled as positioning the company, especially the large firm, as an entity whose existence is fomented by the law due to its service to the community. The concept has evolved with time, departing from a largely philanthropic meaning to being ingrained in nearly every aspect of a company’s operations. This includes investments, entrepreneurship models, and its relationship to stakeholders, leading to an increasing operationalization and globalization of the concept.[6] At first sight, these two movements seem to stem from different contexts. Despite the difference, it is also possible to tell a joint history of bioethics and CSR, with their point of contact being a generalized concern with technological and social changes that surfaced in the sixties. The publishing of Silent Spring in 1962 by Rachel Carson exemplifies this growing concern over the sustainability of the ruling economic growth model of its time by commenting on the effects of large-scale agriculture and the use of pesticides in the population of bees, one of the most relevant pollinators of crops consumed by humans. The book influenced both the author responsible for the coining bioethics in the 1971[7] and early CSR literature.[8] By initiating a debate over the sustainability of economic models, the environmentalist discourse became a precursor to vigorous social movements for civil rights. Bioethics was part of the trend as it would be carried forward by movements such as feminism and the patients’ rights movement.[9] Bioethics would gradually move from a public discourse centered around the responsible use of science and technology to academic and government spaces.[10] This evolution led to an increasing emphasis on intellectual rigor and governance. The transformation would unravel the effort to take effective action against scandal and turn bioethical discourse into governance practices,[11] such as bioethics and research ethics committees. The publication of the Belmont Report[12] in the aftermath of the Tuskegee Syphilis Experiment, as well as the creation of committees such as the “God Committee,”[13] which aimed to develop and enforce criteria for allocating scarce dialysis machines, exemplify this shift. On the side of CSR, this period represents, at first, a stronger pact between businesses and society due to more stringent environmental and consumer regulations. But afterward, a joint trend emerged: on one side, the deregulation within the context of neoliberalism, and on the other, the operationalization of corporate social responsibility as a response to societal concerns.[14] The 1990s saw both opportunities and crises that derived from globalization. In the political arena, the end of the Cold War led to an impasse in the discourse concerning human rights,[15] which previously had been split between the defense of civil and political rights on one side and social rights on the other. But at the same time, agendas that were previously restricted territorially became institutionalized on a global scale.[16] Events such as the European Environment Agency (1990), ECO92 in Rio de Janeiro (1992), and the UN Global Compact (2000) are some examples of the globalization of CSR. This process of institutionalization would also mirror a crisis in CSR, given that its voluntarist core would be deemed lackluster due to the lack of corporate accountability. The business and human rights movement sought to produce new binding instruments – usually state-based – that could ensure that businesses would comply with their duties to respect human rights.[17] This rule-creation process has been called legalization: a shift from business standards to norms of varying degrees of obligation, precision, and delegation.[18] Bioethics has also experienced its own renewed identity in the developed world, perhaps because of its reconnection to public and global health. Global health has been the object of study for centuries under other labels (e.g., the use of tropical medicine to assist colonial expeditions) but it resurfaced in the political agenda recently after the pandemics of AIDS and respiratory diseases.[19] Bioethics has been accused from the inside of ignoring matters beyond the patient-provider relationship,[20] including those related to public health and/or governance. Meanwhile, scholars claimed the need to expand the discourse to global health.[21] In some countries, bioethics developed a tight relationship with public health, such as Brazil,[22] due to its connections to the sanitary reform movement. The United Kingdom has also followed a different path, prioritizing governance practices and the use of pre-established institutions in a more community-oriented approach.[23] The Universal Declaration on Bioethics and Rights followed this shift toward a social dimension of bioethics despite being subject to criticism due to its human rights-based approach in a field characterized by ethical pluralism.[24] This scenario suggests bioethics and CSR have developed out of similar concerns: the protection of human rights and concerns over responsible development – be it economic, scientific, or technological. However, the interaction between these two fields (as well as business and human rights) is fairly recent both in academic and business settings. There might be a divide between these fields and their practitioners. II. A Tale of Jurisdictions It can be argued that CSR and business and human rights did not face jurisdictional disputes. These fields owe much of their longevity to their roots in institutional economics, whose debates, such as the Berle-Dodd debate, were based on interdisciplinary dialogue and the abandonment of sectorial divisions and public-private dichotomies.[25] There was opposition to this approach to the role of companies in society that could have implications for CSR’s interdisciplinarity, such as the understanding that corporate activities should be restricted to profit maximization.[26] Yet, those were often oppositions to CSR or business and human rights themselves. The birth of bioethics in the USA can be traced back to jurisdictional disputes over the realm of medicine and life sciences.[27] The dispute unfolded between representatives of science and those of “society’s conscience,” whether through bioethics as a form of applied ethics or other areas of knowledge such as theology.[28] Amid the civil rights movements, outsiders would gain access to the social sphere of medicine, simultaneously bringing it to the public debate and emphasizing the decision-making process as the center of the medical practice.[29] This led to the emergence of the bioethicist as a professional whose background in philosophy, theology, or social sciences deemed the bioethicist qualified to speak on behalf of the social consciousness. In other locations this interaction would play out differently: whether as an investigation of philosophically implied issues, a communal effort with professional institutions to enhance decision-making capability, or a concern with access to healthcare.[30] In these situations, the emergence and regulation of bioethics would be way less rooted in disputes over jurisdictions. This contentious birth of bioethics would have several implications, most related to where the bioethicist belongs. After the civil rights movements subsided, bioethics moved from the public sphere into an ivory tower: intellectual, secular, and isolated. The scope of the bioethicist would be increasingly limited to the spaces of academia and hospitals, where it would be narrowed to the clinical environment.[31] This would become the comfort zone of professionals, much to the detriment of social concerns. This scenario was convenient to social groups that sought to affirm their protagonism in the public arena, with conservative and progressive movements alike questioning the legitimacy of bioethics in the political discourse.[32] Even within the walls of hospitals and clinics, bioethics would not be excused from criticism. Afterall, the work of bioethicists is often unregulated and lacks the same kind of accountability that doctors and lawyers have. Then, is there a role to be played by the bioethicist? This trend of isolation leads to a plausible explanation for why bioethics did not develop an extensive collaboration with corporate social responsibility nor with business and human rights. Despite stemming from similar agendas, bioethics’ orientation towards the private sphere resulted in a limited perspective on the broader implications of its decisions. This existential crisis of the discipline led to a re-evaluation of its nature and purpose. Its relevance has been reaffirmed due to the epistemic advantage of philosophy when engaging normative issues. Proper training enables the bioethicist to avoid falling into traps of subjectivism or moralism, which are unable to address the complexity of decision-making. It also prevents the naïve seduction of “scientifying” ethics.[33] This is the starting point of a multitude of roles that can be attributed to the bioethicists. There are three main responsibilities that fall under bioethics: (i) activism in biopolicy, through the engagement in the creation of laws, jurisprudence, and public policies; (ii) the exercise of bioethics expertise, be it through the specialized knowledge in philosophical thought, its ability to juggle multiple languages related to various disciplines related to bioethics, or its capacity to combat and avoid misinformation and epistemic distortion; (iii) and, intellectual exchange, by exercising awareness that it is necessary to work with specialists from different backgrounds to achieve its goals.[34] All of those suggest the need for bioethics to improve its dialogue with CSR and business and human rights. Both CSR and business and human rights have been the arena of political disputes over the role of regulations and corporations themselves, and the absence of strong stances by bioethicists risks deepening their exclusion from the public arena. Furthermore, CSR and business and human rights are at the forefront of contemporary issues, such as the limits to sustainable development and appropriate governance structures, which may lead to the acceptance of values and accomplishment of goals cherished by bioethics. However, a gap in identifying the role and nature of bioethics and CSR may also be an obstacle for bridging the chasm between bioethics and CSR. III. From Substance to Form: Philosophical Groundings of CSR and Bioethics As mentioned earlier, CSR is, to some extent, a byproduct of institutionalism. Institutional economics has a philosophical footprint in the pragmatic tradition[35], which has implications for the purpose of the movement and the typical course of the debate. The effectiveness of regulatory measures is often at the center of CSR and business and human rights debates: whatever the regulatory proposal may be, compliance, feasibility, and effectiveness are the kernel of the discussion. The axiological foundation is often the protection of human rights. But discussions over the prioritization of some human rights over others or the specific characteristics of the community to be protected are often neglected.[36] It is worth reinforcing that adopting human rights as an ethical standard presents problems to bioethics, given its grounding in the recognition of ethical pluralism. Pragmatism adopts an anti-essentialist view, arguing that concepts derive from their practical consequences instead of aprioristic elements.[37] Therefore, truth is transitory and context dependent. Pragmatism embraces a form of moral relativism and may find itself in an impasse in the context of political economy and policymaking due to its tendency to be stuck between the preservation of the status quo and the defense of a technocratic perspective, which sees technical and scientific progress as the solution to many of society’s issues.[38] These characteristics mean that bioethics has a complicated relationship with pragmatism. Indeed, there are connections between pragmatism and the bioethics discourse. Both can be traced back to American naturalism.[39] The early effort in bioethics to make it ecumenical, thus building on a common but transitory morality,[40] sounds pragmatic. Therefore, scholars suggest that bioethics should rely on pragmatism's perks and characteristics to develop solutions to new ethical challenges that emerge from scientific and technological progress. Nonetheless, ethical relativism is a problem for bioethics when it bleeds from a metaethical level into the subject matters themselves. After all, the whole point of bioethics is either descriptive, where it seeks to understand social values and conditions that pertain to its scope, or normative, where it investigates what should be done in matters related to medicine, life sciences, and social and technological change. It is a “knowledge of how to use knowledge.” Therefore, bioethics is a product of disillusionment regarding science and technology's capacity to produce exclusively good consequences. It was built around an opposition to ethical relativism—even though the field is aware of the particularity of its answers. This is true not only for the scholarly arena, where the objective is to produce ethically sound answers but also for bioethics governance, where relativism may induce decision paralysis or open the way to points of view disconnected from facts.[41] But there might be a point for more pragmatic bioethics. Bioethics has become an increasingly public enterprise which seeks political persuasion and impact in the regulatory sphere. When bioethics is seen as an enterprise, achieving social transformation is its main goal. In this sense, pragmatism can provide critical tools to identify idiosyncrasies in regulation that prove change is needed. An example of how this may play out is the abortion rights movement in the global south.[42] Despite barriers to accessing safe abortion, this movement came up with creative solutions and a public discourse focused on the consequences of its criminalization rather than its moral aspects. IV. Bridging the Divide: Connections Between Bioethics and CSR There have been attempts to bring bioethics and CSR closer to each other. Corporate responsibility can be a supplementary strategy for achieving the goals of bioethics. The International Bioethics Committee (IBC), an institution of the United Nations Educational, Scientific and Cultural Organization (UNESCO), highlights the concept that social responsibility regarding health falls under the provisions of the Universal Declaration on Bioethics and Human Rights (UDBHR). It is a means of achieving good health (complete physical, mental, and social well-being) through social development.[43] Thus, it plays out as a condition for actualizing the goals dear to bioethics and general ethical standards,[44] such as autonomy and awareness of the social consequences of an organization’s governance. On this same note, CSR is a complementary resource for healthcare organizations that already have embedded bioethics into their operations[45] as a way of looking at the social impact of their practices. And bioethics is also an asset of CSR. Bioethics can inform the necessary conditions for healthcare institutions achieving a positive social impact. When taken at face value, bioethics may offer guidelines for ethical and socially responsible behavior in the industry, instructing how these should play out in a particular context such as in research, and access to health.[46] When considering the relevance of rewarding mechanisms,[47] bioethics can guide the establishment of certification measures to restore lost trust in the pharmaceutical sector.[48] Furthermore, recognizing that the choice is a more complex matter than the maximization of utility can offer a nuanced perspective on how organizations dealing with existentially relevant choices understand their stakeholders.[49] However, all of those proposals might come with the challenge of proving that something can be gained from its addition to self-regulatory practices[50] within the scope of a dominant rights-based approach to CSR and global and corporate law. It is evident that there is room for further collaboration between bioethics and CSR. Embedding either into the corporate governance practices of an organization tends to be connected to promoting the other.[51] While there are some incompatibilities, organizations should try to overcome them and take advantage of the synergies and similarities. CONCLUSION Despite their common interests and shared history, bioethics and corporate social responsibility have not produced a mature exchange. Jurisdictional issues and foundational incompatibilities have prevented a joint effort to establish a model of social responsibility that addresses issues particular to the healthcare sector. Both bioethics and CSR should acknowledge that they hold two different pieces of a cognitive competence necessary for that task: CSR offers experience on how to turn corporate ethical obligations operational, while bioethics provides access to the prevailing practical and philosophical problem-solving tools in healthcare that were born out of social movements. Reconciling bioethics and CSR calls for greater efforts to comprehend and incorporate the social knowledge developed by each field reflexively[52] while understanding their insights are relevant to achieving some common goals. - [1]. Fritz Jahr, “Bio-Ethik: Eine Umschau Über Die Ethischen Beziehungen Des Menschen Zu Tier Und Pflanze,” Kosmos - Handweiser Für Naturfreunde 24 (1927): 2–4. [2]. Van Rensselaer Potter, “Bioethics, the Science of Survival,” Perspectives in Biology and Medicine 14, no. 1 (1970): 127–53, https://doi.org/10.1353/pbm.1970.0015. [3]. Maximilian Schochow and Jonas Grygier, eds., “Tagungsbericht: 1927 – Die Geburt der Bioethik in Halle (Saale) durch den protestantischen Theologen Fritz Jahr (1895-1953),” Jahrbuch für Recht und Ethik / Annual Review of Law and Ethics 21 (June 11, 2014): 325–29, https://doi.org/10.3726/978-3-653-02807-2. [4] George J. Annas, American Bioethics: Crossing Human Rights and Health Law Boundaries (Oxford ; New York: Oxford University Press, 2005). [5] Philip L. Cochran, “The Evolution of Corporate Social Responsibility,” Business Horizons 50, no. 6 (November 2007): 449–54, https://doi.org/10.1016/j.bushor.2007.06.004. p. 449. [6] Mauricio Andrés Latapí Agudelo, Lára Jóhannsdóttir, and Brynhildur Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility,” International Journal of Corporate Social Responsibility 4, no. 1 (December 2019): 23, https://doi.org/10.1186/s40991-018-0039-y. [7] Potter, “Bioethics, the Science of Survival.” p. 129. [8] Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.” p. 4. [9] Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 2003). p. 368-371. [10] Jonsen. p. 372. [11] Jonathan Montgomery, “Bioethics as a Governance Practice,” Health Care Analysis 24, no. 1 (March 2016): 3–23, https://doi.org/10.1007/s10728-015-0310-2. [12]. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, “The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research” (Washington: Department of Health, Education, and Welfare, April 18, 1979), https://www.hhs.gov/ohrp/sites/default/files/the-belmont-report-508c_FINAL.pdf. [13] Shana Alexander, “They Decide Who Lives, Who Dies,” in LIFE, by Time Inc, 19th ed., vol. 53 (Nova Iorque: Time Inc, 1962), 102–25. [14]. Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.” [15]. Boaventura de Sousa Santos, “Por Uma Concepção Multicultural Dos Direitos Humanos,” Revista Crítica de Ciências Sociais, no. 48 (June 1997): 11–32. [16] Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.” [17]. Anita Ramasastry, “Corporate Social Responsibility Versus Business and Human Rights: Bridging the Gap Between Responsibility and Accountability,” Journal of Human Rights 14, no. 2 (April 3, 2015): 237–59, https://doi.org/10.1080/14754835.2015.1037953. [18]. Kenneth W Abbott et al., “The Concept of Legalization,” International Organization, Legalization and World Politics, 54, no. 3 (2000): 401–4019. [19]. Jens Holst, “Global Health – Emergence, Hegemonic Trends and Biomedical Reductionism,” Globalization and Health 16, no. 1 (December 2020): 42–52, https://doi.org/10.1186/s12992-020-00573-4. [20]. Albert R. Jonsen, “Social Responsibilities of Bioethics,” Journal of Urban Health: Bulletin of the New York Academy of Medicine 78, no. 1 (March 1, 2001): 21–28, https://doi.org/10.1093/jurban/78.1.21. [21]. Solomon R Benatar, Abdallah S Daar, and Peter A Singer, “Global Health Challenges: The Need for an Expanded Discourse on Bioethics,” PLoS Medicine 2, no. 7 (July 26, 2005): e143, https://doi.org/10.1371/journal.pmed.0020143. [22]. Márcio Fabri dos Anjos and José Eduardo de Siqueira, eds., Bioética No Brasil: Tendências e Perspectivas, 1st ed., Bio & Ética (São Paulo: Sociedade Brasileira de Bioética, 2007). [23]. Montgomery, “Bioethics as a Governance Practice.” p. 8-9. [24]. Aline Albuquerque S. de Oliveira, “A Declaração Universal Sobre Bioética e Direitos Humanos e a Análise de Sua Repercussão Teórica Na Comunidade Bioética,” Revista Redbioética/UNESCO 1, no. 1 (2010): 124–39. [25] John R. Commons, “Law and Economics,” The Yale Law Journal 34, no. 4 (February 1925): 371, https://doi.org/10.2307/788562; Robert L. Hale, “Bargaining, Duress, and Economic Liberty,” Columbia Law Review 43, no. 5 (July 1943): 603–28, https://doi.org/10.2307/1117229; Karl N. Llewellyn, “The Effect of Legal Institutions Upon Economics,” The American Economic Review 15, no. 4 (1925): 665–83; Carlos Portugal Gouvêa, Análise Dos Custos Da Desigualdade: Efeitos Institucionais Do Círculo Vicioso de Desigualdade e Corrupção, 1st ed. (São Paulo: Quartier Latin, 2021). p. 84-94. [26] Milton Friedman, “A Friedman Doctrine‐- The Social Responsibility of Business Is to Increase Its Profits,” The New York Times, September 13, 1970, sec. Archives, https://www.nytimes.com/1970/09/13/archives/a-friedman-doctrine-the-social-responsibility-of-busines s-is-to.html. [27] Montgomery, “Bioethics as a Governance Practice.” p. 8. [28] John Hyde Evans, The History and Future of Bioethics: A Sociological View, 1st ed. (New York: Oxford University Press, 2012). [29] David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making, 2nd pbk. ed, Social Institutions and Social Change (New York: Aldine de Gruyter, 2003). p. 3. [30] Volnei Garrafa, Thiago Rocha Da Cunha, and Camilo Manchola, “Access to Healthcare: A Central Question within Brazilian Bioethics,” Cambridge Quarterly of Healthcare Ethics 27, no. 3 (July 2018): 431–39, https://doi.org/10.1017/S0963180117000810. [31] Jonsen, “Social Responsibilities of Bioethics.” [32] Evans, The History and Future of Bioethics. p. 75-79, 94-96. [33] Julian Savulescu, “Bioethics: Why Philosophy Is Essential for Progress,” Journal of Medical Ethics 41, no. 1 (January 2015): 28–33, https://doi.org/10.1136/medethics-2014-102284. [34] Silvia Camporesi and Giulia Cavaliere, “Can Bioethics Be an Honest Way of Making a Living? A Reflection on Normativity, Governance and Expertise,” Journal of Medical Ethics 47, no. 3 (March 2021): 159–63, https://doi.org/10.1136/medethics-2019-105954; Jackie Leach Scully, “The Responsibilities of the Engaged Bioethicist: Scholar, Advocate, Activist,” Bioethics 33, no. 8 (October 2019): 872–80, https://doi.org/10.1111/bioe.12659. [35] Philip Mirowski, “The Philosophical Bases of Institutionalist Economics,” Journal of Economic Issues, Evolutionary Economics I: Foundations of Institutional Thought, 21, no. 3 (September 1987): 1001–38. [36] David Kennedy, “The International Human Rights Movement: Part of the Problem?,” Harvard Human Rights Journal 15 (2002): 101–25. [37] Richard Rorty, “Pragmatism, Relativism, and Irrationalism,” Proceedings and Addresses of the American Philosophical Association 53, no. 6 (August 1980): 717+719-738. [38]. Mirowski, “The Philosophical Bases of Institutionalist Economics.” [39]. Glenn McGee, ed., Pragmatic Bioethics, 2nd ed, Basic Bioethics (Cambridge, Mass: MIT Press, 2003). [40]. Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 7th ed (New York: Oxford University Press, 2013). [41]. Montgomery, “Bioethics as a Governance Practice.” [42]. Debora Diniz and Giselle Carino, “What Can Be Learned from the Global South on Abortion and How We Can Learn?,” Developing World Bioethics 23, no. 1 (March 2023): 3–4, https://doi.org/10.1111/dewb.12385. [43]. International Bioethics Committee, On Social Responsibility and Health Report (Paris: Unesco, 2010). [44]. Cristina Brandão et al., “Social Responsibility: A New Paradigm of Hospital Governance?,” Health Care Analysis 21, no. 4 (December 2013): 390–402, https://doi.org/10.1007/s10728-012-0206-3. [45] Intissar Haddiya, Taha Janfi, and Mohamed Guedira, “Application of the Concepts of Social Responsibility, Sustainability, and Ethics to Healthcare Organizations,” Risk Management and Healthcare Policy Volume 13 (August 2020): 1029–33, https://doi.org/10.2147/RMHP.S258984. [46]The Biopharmaceutical Bioethics Working Group et al., “Considerations for Applying Bioethics Norms to a Biopharmaceutical Industry Setting,” BMC Medical Ethics 22, no. 1 (December 2021): 31–41, https://doi.org/10.1186/s12910-021-00600-y. [47] Anne Van Aaken and Betül Simsek, “Rewarding in International Law,” American Journal of International Law 115, no. 2 (April 2021): 195–241, https://doi.org/10.1017/ajil.2021.2. [48] Jennifer E. Miller, “Bioethical Accreditation or Rating Needed to Restore Trust in Pharma,” Nature Medicine 19, no. 3 (March 2013): 261–261, https://doi.org/10.1038/nm0313-261. [49] John Hardwig, “The Stockholder – A Lesson for Business Ethics from Bioethics?,” Journal of Business Ethics 91, no. 3 (February 2010): 329–41, https://doi.org/10.1007/s10551-009-0086-0. [50] Stefan van Uden, “Taking up Bioethical Responsibility?: The Role of Global Bioethics in the Social Responsibility of Pharmaceutical Corporations Operating in Developing Countries” (Mestrado, Coimbra, Coimbra University, 2012). [51] María Peana Chivite and Sara Gallardo, “La bioética en la empresa: el caso particular de la Responsabilidad Social Corporativa,” Revista Internacional de Organizaciones, no. 13 (January 12, 2015): 55–81, https://doi.org/10.17345/rio13.55-81. [52] Teubner argues that social spheres tend to develop solutions autonomously, but one sphere interfering in the way other spheres govern themselves tends to result in ineffective regulation and demobilization of their autonomous rule-making capabilities. These spheres should develop “reflexion mechanisms” that enable the exchange of their social knowledge and provide effective, non-damaging solutions to social issues. See Gunther Teubner, “Substantive and Reflexive Elements in Modern Law,” Law & Society Review 17, no. 2 (1983): 239–85, https://doi.org/10.2307/3053348. (shrink)

Photo by AbsolutVision on Unsplash INTRODUCTION Social media, news headlines, and podcasts implicitly and explicitly remind us of the digital misinformation maelstrom we navigate every day to understand the truth of current events. Misinformation feeds off the topics that impact our lives and draw our attention – war, health, politics, identity, fear, and empathy. Misinformation has a digital reach faster and wider than true information based on its nature of novelty and emotional instigation.[1] It draws from data leakages, twists the (...) truth, incites emotional responses, and can undermine real efforts to protect and aid vulnerable communities. Many of the places and events targeted by misinformation are sites of humanitarian crises such as Gaza, Yamen, and Ukraine among many others. Humanitarian groups conceived to provide relief to vulnerable communities are susceptible to personal harm and impeded aid because the organizational structure is not equipped for misinformation and data security breaches. While propaganda and misinformation did not emerge in the contemporary, their scope, speed, and impact have exponentially increased as the world’s use of digital media for communication developed. The current state of misinformation and data leakages are threats to humanitarian efforts, especially the vital and nuanced task of humanitarian medical aid that now simultaneously relies on the digital information ecosystem. ANALYSIS Humanitarian efforts center on the four main principles of humanity, neutrality, impartiality, and operational independence. The United Nations Refugee Agency specifies that ‘humanity’ refers to addressing human suffering wherever it is found to ensure health and respect, ‘neutrality’ is to not engage in political, racial, religious, or ideological controversies, ‘impartiality’ is to provide aid based on need alone without bias and priority, and ‘operational independence’ is to conduct aid autonomous from agendas or actors in sectors such as political, economic, or military.[2] Medecins Sans Frontieres explicitly states neutrality, impartiality, independence, bearing witness, and accountability in their code of principles. Their statement on medical ethics is much more vague. It aims to “carry out our work with respect for the rules of medical ethics, in particular the duty to provide care without causing harm to individuals or groups. We respect patients’ autonomy, patient confidentiality, and their right to informed consent.”[3] Confidentiality is mentioned, but in the nondescript sense that could refer to confidentiality outlined in any number of medical ethics contexts. Three most commonly referred to ethical codes in Western medicine are the Declaration of Helsinki, the Belmont Report, and the Code of the American Medical Association (AMA). The Declaration of Helsinki places confidentiality in the context of research and was written pre-digital age in the 1960s.[4] The Belmont Report does not mention confidentiality or patient privacy in its summation of medical ethics from 1978.[5] Lastly, the AMA’s Code of Medical Principles upholds that physicians “shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy within the constraints of the law.”[6] This AMA principle was adopted in 1957 and revised in 2001, still before the onset of widely accessible digital media. These three medical ethics codes are the standard of Western medicine, and yet they are decades obsolete when facing the harm of digital misinformation and data leakages. Humanitarian aid organizations cannot afford to rely on outdated medical ethical codes amid digital misinformation and data leakages. Medical humanitarian relief groups such as Medecins Sans Frontiers, the International Medical Corps, the WHO Global Health and Peace Initiative, and the International Committee of the Red Cross, rely on the medical ethics defined in the aforementioned guides in addition to their humanitarian foundation. These codes, while useful, were written prior to the digital age. And, as our methods of communication, medical delivery, and global action have evolved and digitized, the ethics guiding medical practice should be updated to reflect this dramatic change. Humanitarian medical organizations need the digital ecosystem to store metadata for medical services such as patient history, blood type, metrics on locations in need of aid, missing person searches, and funding. The levels of data vulnerable to misconstruction and hacking exist on the personal and organizational levels. Individual providers and the organizational body should prioritize confidentiality. Thus humanitarian medical ethics should adapt to the reality of the digital age to not endanger the populations receiving aid and to not propagate harm. Misinformation and data leakage can lead to microtargeting, defamation, provider endangerment, and other harms preventing medical service. The European Data Protection Supervisor details how the personal information collected by organizations, such as medical, can be stolen or misconstrued to affect microtargeting, placing individuals in the direct path of echo chambers, digital tracking, and manipulation.[7] The International Broadcasting Trust released a report in 2018 detailing the extent to which misinformation was impacting the humanitarian aid groups it broadcasts to.[8] For example, the report shared that rumors spread by right-wing political groups in 2017 falsely circulated that humanitarian groups in the Mediterranean were collaborating with child trafficking rings.[9] After causing defamation, the right-wing group sent a boat to block and detain the humanitarian group’s search and rescue boat. This was one incident among many where providers and patients were put in harm’s way through misinformation and the misuse of location data. Other disinformation campaigns can be carried out by governments as well; in Syria and Ukraine, the Russian government has been specifically targeting Red ross and White Helmets.[10] Beneficial medical services cannot be delivered if providers and patients are targeted. In January of 2022, the International Association of the Red Cross was hacked. Approximately 515,000 vulnerable persons’ data was leaked and became inaccessible to the IARC providers.[11] If an organization cannot protect access to its digital ecosystem, humanitarian medical aid efforts can be rendered ineffective. Additionally, misinformation and breached data cause the less immediate but more widely impactful harm of distrust. Stakeholders and funding sources can withdraw from supporting medical humanitarian aid organizations. Beneficial medical services cannot be offered if there is no monetary backing. Providers and patients also have their own digital devices and means of communication which can lead to sensitive information being shared online or with non-neutral parties. If a patient cannot trust their provider or the organization a provider acts in the name of, medical services can be refused. Beneficial medical service cannot be conducted if the trust of the patient is compromised by humanitarian groups failing to prioritize patient confidentiality. Confidentiality should be prioritized in humanitarian medical aid to safeguard against the extended harms of data leakage, misinformation, and malintent. Some critiques may postulate that due to the uniqueness of each community aided by medical humanitarian organizations, over-standardization from rigid ethical codes may occur, that standardization can lead to inflexibility with communities and render aid strategies ineffective. However, the reality is that ethical frameworks make sure that individual actors are not monolithic – they allow for collaboration and joint work. The WHO Global Health and Peace Initiative’s recent adoption of conflict sensitivity, along with other organizations’ additions of similar language, ensure that there is a feedback loop incorporated into the ethical code to mitigate unintended harm. Thus, ethical codes are helping providers to respond in unprecedented situations with consciousness to harm propagation. In events of limited time and of crisis, comprehensive ethical codes are especially beneficial because we rely on habits and pre-established information banks. CONCLUSION Humanitarian medical ethics should include a specific guide for confidentiality. Without forethought and the integration of traditional and digital confidentiality as a main tenant, medical humanitarian organizations will continue to act retrospectively. Trust in stakeholder-provider-patient relationships will continue to disintegrate. The current status quo of medical ethics in the humanitarian aid sector poses multiple risks for providers and patients whereas adopting stronger confidentiality language is a tangible step towards the protection of vulnerable communities from the harms of digital misinformation and data leakage. - [1] Vosoughi, Soroush, Deb Roy, and Sinan Aral. “The Spread of True and False News Online.” Science 359, no. 6380 (2018): 1146–51. https://doi.org/10.1126/science.aap9559. [2] “Conflict Sensitivity and the Centrality of Protection.” The Global Portection Cluster, March 2022. https://www.globalprotectioncluster.org/sites/default/files/2023-03/220318_gpc_-_conflict_sens.pdf. [3] “Our Charter and Principles.” MEDECINS SANS FRONTIERES - MIDDLE EAST. Accessed December 24, 2023. https://www.msf-me.org/about-us/principles/our-charter-and-principles#:~:text=We%20give%20priority%2 0to%20those,of%20governments%20or%20warring%20parties.&text=The%20principles%20of%20impartiality%20a nd%20neutrality%20are%20not%20synonymous%20with%20silence. [4] “WMA - The World Medical Association-WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects.” The World Medical Association. Accessed December 24, 2023. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-researc h-involving-human-subjects/. [5] Office for Human Research Protections (OHRP). “ The Belmont Report.” United States Department of Health and Human Services, September 27, 2022. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html. [6] American Medical Association. “The Code.” AMA principles of Medical Ethics. Accessed December 24, 2023. https://code-medical-ethics.ama-assn.org/principles. [7] “EDPS Opinion on Online Manipulation and Personal Data.” European Data Protection Supervisor. Accessed December 24, 2023. https://edps.europa.eu/sites/edp/files/publication/18-03-19_online_manipulation_en.pdf. [8] Robin. “Faking It: Fake News and How It Impacts on the Charity Sector.” International Broadcasting Trust, March 13, 2020. https://www.ibt.org.uk/reports/faking-it/. [9] Reed, B. “Charities Colluding with Traffickers? Fake News.” The Guardian, February 15, 2018. https://www.theguardian.com/global-development/2018/feb/15/charities-aid-agencies-fake-news-says-rep ort. [10] Sant, Shannon Van. “Russian Propaganda Is Targeting Aid Workers.” Foreign Policy, August 1, 2022. https://foreignpolicy.com/2022/08/01/russia-disinformation-ukraine-syria-humanitarian-aid-workers/. [11] International Committee of the Red Cross. “Hacking the Data of the World’s Most Vulnerable Is an Outrage.” International Committee of the Red Cross, October 27, 2022. https://www.icrc.org/en/document/hacking-data-outrage. (shrink)

Photo ID 277640924© Dizain777 | Dreamstime.com INTRODUCTION Medicine is intertwined with promotion of positive health while prioritizing a patient’s diagnosis, prognosis, and treatment. The prioritization of a patient’s needs stems from a branch of morality called biomedical ethics, which focuses on moral principles that arise in healthcare, medical research.[1] Biomedical ethics serves to provide a framework for addressing complex medical questions while safeguarding the rights, dignity, and well-being of individuals.1 Often times in healthcare, decisions made by physicians and patients result (...) in beneficence and/or maleficence. Beneficence implies that healthcare professionals and institutions have a moral duty to act in a patient’s best interest by providing positive health outcomes while minimizing harm (maleficence).1 As a result of biomedical ethics’ emphasis on beneficence and maleficence, healthcare is designed to respect a patient’s needs, beliefs, and decisions. The practice of allowing patients to make their own medical decisions is called autonomy, and it is vital to biomedical ethics because it emphasizes the concerns of the patient.[2] However, it is difficult to ensure that a person has autonomy over their medical decision-making if they are not fully informed about the circumstances of their health or treatment options. ANALYSIS Thus, an important aspect of biomedical ethics is informed consent. Informed consent is a practice in healthcare and research where individuals must voluntarily agree to or decline medical care after being educated about their medical condition.[3] Informed consent protects an individual’s right to express their beliefs and make educated decisions about their health. Furthermore, there is an important distinction to be made between voluntary consent and informed consent. While informed consent emphasizes that individuals are fully educated and comprehend information about a procedure, voluntary consent maintains that a person must freely and willingly make decisions without any form of pressure or coercion.3 While a patient might be educated or informed about their health, they might not have the power to voluntarily make medical choices. Thus, consent must be both informed and voluntary to ensure that a patient is fully educated while preserving the right to make medical decisions. Without autonomy and (voluntary) informed consent, individuals would be deprived of their freedom to make educated medical choices, leading to interventions that do not align with their wishes or desires. However, autonomy and informed consent also have severe limitations and barriers, specifically when it comes to the informedness gap, cognitive capacity, and underestimation or overestimation of treatment risks. According to author Onora O’Neill, the informedness gap occurs when patients may not fully understand the complex medical information provided to them by their physician.[4] The informedness gap is especially prevalent when medical professionals discuss complex procedures or treatments, as the patients may feel overwhelmed by the information and not make truly informed decisions. In addition to the informedness gap, limited cognitive capacity and mental health can hinder effective communication and informed consent.[5] When patients are unable to provide informed consent due to factors like dementia, mental illness, or unconsciousness, ensuring thorough communication and education becomes extremely challenging.4 Additionally, it is important to consider how informed consent is limited by underestimation or overestimation of treatment risks. Patients may be overly optimistic about the success of a treatment or procedure, thereby underestimating the likelihood of complications or adverse outcomes. On the other hand, patients may possess fear and anxiety, causing them to overestimate the effects of treatment. Anxiety can cause a heightened perception of risk, which can lead to refusal of beneficial treatments, despite the presence of objective medical evidence.[6] Overall, these limitations of informed consent demonstrate that even when a patient is educated about their health, they still might not be fully knowledgeable when making medical decisions. In fact, while patients have the power of autonomy to make medical choices, the limitations of informed consent can have fatal effects. This becomes abundantly clear when looking at the case study of the world-famous musician, Michael Jackson. Michael Jackson’s death was the result of acute propofol and benzodiazepine intoxication. Propofol and benzodiazepine are extremely powerful medications commonly used for ICU sedation.[7] Dr. Conrad Murray, Michael Jackson's personal physician, was involved in Jackson’s care leading up to his death and played a central role in the events surrounding it. To briefly summarize the case, Michael Jackson was experiencing chronic insomnia and sought medical treatment after struggling to sleep for months.[8] Initially, Dr. Murray prescribed conventional anti-anxiety medications to help the artist sleep, but he was unsuccessful in resolving Jackson’s symptoms.7 Without coercing the artist, Dr. Murray offered to administer the powerful anesthetics, propofol and benzodiazepine. After Dr. Murray’s brief description of the effects of propofol and benzodiazepine, Jackson voluntarily agreed to this treatment.7 Initially, the treatment was a success, but Jackson was unaware of the significant toll these sedatives had on his health. On June 25th, 2009, after 2 and a half months of treatment, Jackson experienced severe propofol intoxication, causing him to die from cardiac arrest.[9] Clearly, this case highlights how limitations of informed consent, specifically the informedness gap and underestimation of treatment risks, can have fatal consequences. Michael Jackson was granted the autonomy to make medical decisions about treatments for his insomnia, and he was briefly informed that propofol and benzodiazepine are potent sedatives.7 However, according to the artist’s family, Jackson wasn’t fully educated about the level of addictivity and long-term ramifications of the drugs he was administered.8 The Jackson family cited that while the artist voluntarily agreed to treatment, his chronic sleep deprivation caused him to underestimate the effects of his medication. The family explained that Jackson lacked the mental capacity to make informed decisions about his health.8 Perhaps the outcome of this case may have been different if Dr. Murray had fully explored alternatives for treatment or made a thorough effort to fully educate Jackson about the effects of propofol. Additionally, it is difficult to discredit how sleep deprivation hindered Jackson’s ability to make rational decisions about his health.8 While it is true that Dr. Murray informed Michael Jackson about the strength of the sedatives he was administered, that doesn’t mean Jackson fully understood the treatment’s consequences or the weight of his decision. Furthermore, Michael Jackson didn’t suffer from the limitations of informed consent because of his unique status as a celebrity; Jackson is not an exception from the norm. Research suggests that factors such as limited interaction time between patients and physicians causes an informedness gap in about 1 out of every 3 people.[10] Michael Jackson had the wealth and resources to be informed about his health; he could have employed any doctor to provide his treatment. Yet, the average person does not have the resources to employ their own doctor or be thoroughly educated about their health.10 If Michael Jackson wasn’t fully informed about his medical condition or treatment, it is likely that the average person is uninformed as well. CONCLUSION To put it simply, autonomy and informed consent ensure that individuals can express their personal beliefs while making educated decisions about their health. However, it is crucial to consider the limitations of informed consent such as the informedness gap, cognitive capacity, and misjudgment of treatment risks. How useful is autonomy and informed consent if patients lack the ability to think clearly, logically, and holistically about their health?[11] The tragic case of Michael Jackson exemplifies how limitations of informed consent have profound consequences. Although Jackson was informed about the risks associated with propofol and voluntarily agreed to his treatment, he was not fully aware of the drug’s long-term ramifications. If healthcare seeks to achieve positive health outcomes, there is an ongoing need for effective communication and patient education to address the limitations of autonomy and informed consent. - [1]Tom L. Beaucham, Standing on Principles: Collected Essay p, European Journal of Health Law 19, no. 5 (2012): 544–51. [2] Daniel Callahan, “Autonomy: A Moral Good, Not a Moral Obsession,” The Hastings Center Report 14, no. 5 (1984): 40–42, https://doi.org/10.2307/3561098. [3] Onora O’Neill, “Between Consenting Adults,” Philosophy & Public Affairs 14, no. 3 (1985): 252–77. [4] Onora O’Neill, “Some Limits of Informed Consent,” Journal of Medical Ethics 29, no. 1 (February 1, 2003): 4–7, https://doi.org/10.1136/jme.29.1.4. [5] Antoine Aoun, Sibelle Al Hayek, and Flora El Jabbour, “The Need for a New Model of the Physician–Patient Relationship: A Challenge for Modern Medical Practice,” Family Medicine & Primary Care Review 20, no. 4 (2018): 379–84, https://doi.org/10.5114/fmpcr.2018.79351. [6] Rebecca Dresser. "Sunday Dialogue: Conversations Between Doctor and Patient,” The New York Times, August 25, 2012, sec. Opinion, https://www.nytimes.com/2012/08/26/opinion/sunday/sunday-dialogue-conversations-between-doctor-and-p atient.html. [7] Katherine Harmon, “What Is Propofol--and How Could It Have Killed Michael Jackson?” Scientific American, accessed October 15, 2023, https://www.scientificamerican.com/article/propofol-michael-jackson-doctor/. [8] “Doctor Is Guilty in Michael Jackson’s Death - The New York Times,” accessed October 15, 2023, https://www.nytimes.com/2011/11/08/us/doctor-found-guilty-in-michael-jacksons-death.html. [9] B. Lyons, “Medical Manslaughter,” Irish Medical Journal 106, no. 1 (January 2013): 26–27. [10] D. R. Hansberry et al., “Are We Effectively Informing Patients? A Quantitative Analysis of On-Line Patient Education Resources from the American Society of Neuroradiology,” American Journal of Neuroradiology 35, no. 7 (July 1, 2014): 1270–75, https://doi.org/10.3174/ajnr.A3854. [11] Rebecca Kukla, “How Do Patients Know?,” Hastings Center Report 37, no. 5 (2007): 27–35. (shrink)

Photo by Olga Kononenko on Unsplash INTRODUCTION “Because there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal.” Dr. Timothy Quill, a professor of psychiatry, bioethics, and palliative care concisely articulates an ethical intricacy in end-of-life care. In a Washington Post article titled, “Assisted suicide is controversial, but palliative sedation is legal and offers peace,” the discussion revolves around the ethical challenges encountered by physicians when deciding to employ palliative sedation, particularly (...) when faced with terminal illnesses causing unbearable physical and existential suffering. Palliative sedation is defined as the intentional lowering of awareness towards, and including, unconsciousness for patients with severe and refractory symptoms.[1] While assisted suicide remains embroiled in legal debates, palliative sedation emerges as a legally sanctioned alternative, thereby burdening medical practitioners with a moral quandary; while the boundary between assisted suicide and palliative sedation is arguably blurred, intent seems to distinguish the two choices– both aim to reduce suffering, but palliative sedation does not have death as the goal. This leads to the ethical question on the permissibility of hastening or causing unconsciousness in dying patients, rather than the issue of whether causing death is ethically justifiable. The absence of explicit laws governing palliative sedation places the ethical dilemma squarely on the shoulders of healthcare professionals, who must grapple with the responsibility of determining if palliative sedation is in the best interest of the patient. Evidently, the choice the clinician makes crucially impacts the patient’s quality of life moving forward, demonstrating the far-reaching consequences of palliative sedation in not just individual experiences in healthcare, but in shaping the future of how palliative care is handled. By integrating clinical and neuroscience knowledge, an argument can be made that the optimal clinical decision is reached by considering the subjective value of consciousness for each individual patient, with candor and transparency being the basis of all counseling approaches to prioritize patient advocacy. ANALYSIS Drawing on the precedent of assisted suicide, a major concern physicians have when debating the use of palliative sedation is the clause to “do no harm”, a principle fundamental to their profession in healthcare. A paradoxical dilemma arises when reducing the pain of a patient may come at the cost of their consciousness– which is more harmful? Having strict guidelines on when palliative seduction is even an option alleviates some responsibility on the physician to make this choice; the choice of the patient, or informed consent, is preliminary for this therapy.[2] By having the patient aware of the risks, and having that patient decide what state they value more, a physician can base their decision on what “harm” means in relation to the patient’s definition. Of course, there are additional considerations that must be contended with before this assumption can be reliably used, such as the state of mind of the patient when this decision is made, as well as the general consensus that exists among the patient, family, and staff about the therapy’s appropriateness. Another concern then seems to be the actual practice of palliative sedation– what are the side effects and unintended consequences of this therapy? So far, the academic literature seems promising in the accuracy of the therapy; according to a review of 1,807 patients, there is no direct evidence from randomized clinical trials that palliative sedation, when appropriately indicated and correctly used to relieve unbearable suffering, has detrimental effect on the survival of patients with terminal cancer, and can be considered as part of a continuum of palliative care.[3] A more cynical viewpoint should also be considered, however, for the integration of different perspectives, possibilities, and predictions that allow for a comprehensive overview of palliative sedation. One possibility, a prospect unfortunately commonly considered in healthcare, is that palliative sedation can lead to death prematurely. This is where the clinician’s knowledge comes into play, particularly their expertise in the field of neuroscience and the operational definitions of consciousness. Various medications used in palliative care may influence the brain's neurochemistry, impacting consciousness and contributing to the relief of suffering. For instance, benzodiazepines such as midazolam and lorazepam, commonly employed in palliative sedation, act as central nervous system depressants. They enhance the inhibitory effects of the neurotransmitter gamma-aminobutyric acid (GABA), leading to sedation, anxiolysis, and amnesia.[4] The neurological effects of these medications involve modulation of neurotransmitter activity, resulting in a calming effect on the brain. Midazolam, in particular, has a rapid onset of action and a short duration, making it suitable for managing acute distress in terminally ill patients.[5] As these medications induce sedation, they may contribute to the lowering of consciousness levels, while also relieving chronic suffering. Ultimately, it is up to the clinician to use their expertise to not only weigh the possible outcomes of the medications, but to also clearly communicate the potential consequences to the patients in a thoughtful manner. The doctrine of double effect (DDE) may also help to ameliorate the ethical conundrum of whether practicing palliative sedation is ethically justifiable. In the context of palliative sedation, the application of the doctrine of double effect becomes particularly salient. According to the criteria set by the DDE, the action of administering sedative medications, such as morphine, is deemed morally permissible if certain conditions are met.[6] Firstly, the action itself, providing relief from severe and refractory symptoms through sedation, is not inherently bad—it is morally neutral or, in some cases, considered good due to its intent to alleviate suffering. The primary intention must be the relief of suffering, with the secondary and potentially adverse effect of unconsciousness or hastening death not being the desired outcome but rather an unintended consequence. The DDE thus allows healthcare professionals to navigate the ethical intricacies of palliative sedation by placing a strong emphasis on the intention behind the action. In cases where consciousness is significantly diminished, as is often the case with palliative sedation, the doctrine provides a framework for evaluating the ethical justifiability of the intervention. The principle that the good effect (relief from suffering) must outweigh the potentially adverse effect (unconsciousness or hastening death) ensures a careful and considered approach to decision-making. The deliberation to use palliative sedation can be framed in the area of the ethics of neuroscience, as the choice to go through with palliative sedation involves the use of clinical decision-making, neuroscience, and ethical considerations related to consciousness.[7] The scientific diagnoses and definitions on how consciousness is perceived and how medications affect consciousness highlights a neuroscientific aspect; the optimal clinical decision-making process involves contemplating this variable value of consciousness. This brings in the ethical dimension, as clinicians must navigate the complexities of respecting individual perspectives and values related to consciousness, which can be influenced by neuroscientific factors such as cognitive functioning, brain health, and subjective experiences. CONCLUSION In summary, the ethical considerations surrounding palliative sedation compel clinicians to navigate the nuances of moral responsibility, patient advocacy, and clinical judgment. In the absence of clear legal guidelines, clinicians bear the weight of deciding the appropriateness of palliative sedation, influencing both individual patient experiences and broader palliative care practices. The doctrine of double effect provides a valuable ethical framework, emphasizing intentionality and the delicate balance between relieving suffering and unintended consequences. Ultimately, a patient-centered approach is essential to make the best decisions possible while upholding the principles of beneficence and non-maleficence, ensuring that end-of-life care aligns with the values of each individual patient. - [1] American Academy of Hospice and Palliative Medicine. 2014. “Palliative Sedation | AAHPM.” Directed by AAHPM. 2023. https://aahpm.org/positions/palliative-sedation. [2] Young et al. 2021. “The Neuroethics of Disorders of Consciousness: A Brief History of Evolving Ideas.” Brain 144 (11): 3291–3310. https://doi.org/10.1093/brain/awab290. [3] Maltoni et al. 2012. “Palliative Sedation in End-of-Life Care and Survival: A Systematic Review.” Journal of Clinical Oncology 30 (12): 1378–83. https://doi.org/10.1200/jco.2011.37.3795. [4] Griffin, CE, 3rd et al. 2013. “Benzodiazepine Pharmacology and Central Nervous System-Mediated Effects.” PubMed. https://pubmed.ncbi.nlm.nih.gov/23789008. [5] Prommer, Eric. 2020. “Midazolam: An Essential Palliative Care Drug.” Palliative Care and Social Practice 14 (January): 263235241989552. https://doi.org/10.1177/2632352419895527. [6] Takla et al. 2020. “A Conscious Choice: Is It Ethical to Aim for Unconsciousness at the End of Life?” Bioethics 35 (3): 284–91. https://doi.org/10.1111/bioe.12838. [7] Roskies, Adina. 2002. “Neuroethics for the New Millenium.” Neuron 35 (1): 21–23. https://doi.org/10.1016/s0896-6273(02)00763-8. (shrink)

Photo by Maxim Berg on Unsplash INTRODUCTION The brain is one of the most foundational parts of being human, and we are still learning about what makes humans unique. Advancements in technology have allowed for the creation of miniature brain structures using pluripotent stem cells to mimic the embryonic human brain. These stem cells randomly accumulate into brain-like structures, consisting of tens of millions of cells spanning a few millimeters wide.[1] As brain organogenesis becomes more complex, these models may begin (...) to exhibit consciousness, pain, and sentience. If these organoids become more complex, it is necessary to question the rights of brain organoids and the ethics of working with brain-like structures that begin to mirror our own identities. Overall, brain organoid usage has remarkable benefits that outweigh the negative outcomes. However, there must be continued exploration of the moral ramifications of greater levels of consciousness that brain organoids may exhibit in the future. ANALYSIS Knowing whether brain organoids should be used in research requires understanding what constitutes a conscious brain and how to classify a brain organoid. Due to its modeling of a human embryonic brain, it is helpful to explore the ethical considerations researchers should take both currently and as this field of research progresses. This philosophical question concerns the concept of self-identification and what it means to be human. It is also important to explore the levels of autonomy the brain should have due to its core role in how humans define themselves. As brain organogenesis technologies advance and facilitate the development of more complex brain organoids, this question becomes especially relevant. It blurs the line of ethical human subject research and has the power to alter the decisions that the scientific community makes about human-based research. In the brain organoid's current relatively undeveloped state, large bodies of evidence suggest that brain organoids are suitable and viable alternatives for research. Brain organogenesis research aids in various brain-based medical conditions, such as neurodegenerative diseases, developmental disorders, and Zika virus-infected fetuses.[2] Additionally, it allows for an alternative and potentially ethical approach to animal testing in research.[3] I. Brain Organoids Brain organoids are created from randomized self-clustering pluripotent stem cells using signaling factors, essentially modeling the human brain during its embryonic stage.[4] These models can aid in the understanding of both brain development and disorders. This includes a more comprehensive understanding of hereditary brain abnormalities, human evolution, neurological diseases, and psychiatric disorders.[5] Brain organoids replicate many features of human brain development during the embryonic stage, both structurally and functionally however, gyrification, cerebral cortex formation, and neuronal wiring are not fully developed.[6] This creates a relatively accurate novel model that is helping forge the field of neuroscience and strives toward a more accurate representation of the human brain. II. Brain Organoids Deficiencies Brain organoids provide an innovative way to enhance current neuroscience; however, opposing viewpoints would argue about the brain organoids deficiencies such as the several major differences between organoids and an embryonic brain. Firstly, this includes a lack of vascularization, causing cells to eventually die in the center.[7] Additionally, current methods only allow for the growth of neurons, excluding microglia, endothelial cells, blood cells, and immune cells, further altering an accurate neural environment.[8] Lastly, there is a significant amount of variation between the brain organoids based on the laboratory procedure and stem line used.[9] While brain organoids are excellent models, they are unable to accurately represent the adult human brain, and current research methods introduce a high level of mutations.[10] III. Benefits of Brain Organoid Research Brain organoid research should be pursued because it serves as an alternative to animal-based research, helps us understand the differences between hominid-like species, and advances the study of neurodegenerative diseases.[11] Moreover, while the formation of the brain is representative of the human brain, it lacks full complexity, including networking and complete vascularization.[12] This evidence suggests that brain organoids are not yet sentient, making them important replicas and alternatives to animal testing. Modern medicine research routinely uses animals as test subjects which is problematic because animals cannot provide informed consent, and guidelines often focus on harm minimization with little regard for animal welfare as long as it benefits human research.[13] Seeking alternatives, such as the development of brain organoids, could greatly minimize animal suffering and serve as ethical alternatives. Brain organoids provide a way to study neurological disorders and diseases with a more physiologically accurate model. Currently, in the field of neurodegenerative diseases, many preclinical models fail to accurately represent the diseases they work with.[14] For instance, mouse models of Alzheimer's disease are genetically modified to overexpress high levels of human genetic mutations, however, the Alzheimer's phenotype is not expressed as expected.[15] Therefore, brain organoids have been considered the most ideal model for Alzheimer’s disease because they allow researchers to observe Aβ deposits, Tau tangles, and neuronal degeneration.[16] Brain organoids have been far more accurate representations than both the mice and two-dimensional neuron models.[17] In addition to Alzheimer’s studies, investigations about the Zika virus are better understood by examining the mechanisms in the brain organoids that resulted in microcephaly.[18] These studies more effectively capture the structure of the fetal brain during the first and second trimesters of pregnancy and more efficiently deconstruct the formation of microcephaly through the observation of neural progenitor cells and other cellular structures.[19] Furthermore, studying brain organoids enhances our understanding of human brain development in comparison to other hominid-like species, such as one of our closest relatives – Neanderthals. It reveals some of the underpinnings of human evolution and the brain-based advantages that gave humans survival advantages over other hominid-like species. Neanderthal brain organoid research has shown that Neanderthal organoids have an irregular "popcorn-like" shape compared to the spherical shape of human brain organoids.[20] The differences in organoid shape suggest contrasts in their neuronal networks, potentially altering social abilities.[21] This research solidifies the role of the NOVA1 gene in socialization and provides further insight into both autism and schizophrenia.[22] IV. Brain Organoids Consciousness As technology becomes more advanced, brain organoids may eventually exhibit a higher level of consciousness, intelligence, and sentience. Currently, the use of brain organoids is regulated by the Embryonic/Human Stem Cell Research Oversight Committee (E/HSCRO) due to the stem cells used to generate them.[23] If brain organoids become more complex, ethical considerations will need to be expanded.[24] It can be inferred that researchers currently treat brain organoids similar to animal research, as both have reduced abilities to consent to research, allowing greater research freedom. Recent studies indicate that human cerebral organoids exhibit the same brain neuron connectivity and electroencephalogram (EEG) patterns as those collected from preterm babies.[25] This data supports the idea that brain organoids may eventually experience pain or even basic forms of consciousness.[26]Those in opposition to brain organoid research would argue that research supports the claim that brain organoids have achieved a high level of sentience and that experimental research, even at this stage, may be considered unethical. Defining the concept of self is crucial for classifying brain organoids and distinguishing the line between ethical and unethical research. Examining how we perceive self allows us to understand how research will be conducted with brain organoids. In Being and Nothingness, Jean-Paul Sartre states that when someone looks at him, it supports the idea of his existence and sense of self.[27] Since the body would need to be seen within the gaze of another person, it also suggests that people would need to have a body to have an existence or an identity. Therefore, while this primitive brain state may have rudimentary consciousness, it does not have true existence due to a lack of a body. This would exclude the regulations imposed on human and animal research and allow for a laissez-faire approach to the research aside from stem cell regulation. In opposition, Schermer argues that “When we give up mind, as if that is even possible, we are nothing and nowhere.”[28] The creation of a brain organoid is the creation of a mind and therefore even the potential creation of the human self. Human research regulations would then be responsible for brain organoids in their more developed states. CONCLUSION The use of brain organoids is promising and expands our understanding of the brain and how it is affected by other neurological factors, such as disease or genetics. There are significant benefits in advancing our comprehension of neurodegenerative diseases such as Alzheimer’s, the Zika virus, and its effect on the fetus, and gaining a better understanding of our prehistorical brain evolution and development. Moreover, creating brain organoids is an efficient and potentially ethical alternative to animal testing. However, further research into brain organoids has suggested that there is a baseline level of consciousness that mirrors a human embryo, and there are still deficiencies in brain organoids that don’t perfectly replicate the human brain. Considering the rapidly progressing technology, ethical principles must also be evaluated to determine what it means to be human and where to draw the line of ethical research on more developed brain-like models. Overall, in the current state of brain organoids, researchers should work to harness brain organoids to their fullest potential to further contribute to the fields of neuroscience. - [1] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3; Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y [2] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3 [3] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707 [4] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y [5] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3 [6] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3 [7] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3 [8] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3 [9] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3 [10] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653 [11] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3 [12] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y [13] Gerakis, Y. (2019). Hetz, C. Brain organoids: a next step for humanized Alzheimer’s disease models?. Mol Psychiatry 24, 474–478. https://doi.org/10.1038/s41380-018-0343-7 [14] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707 [15] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707 [16] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707 [17] Gerakis, Y. (2019). Hetz, C. Brain organoids: a next step for humanized Alzheimer’s disease models?. Mol Psychiatry 24, 474–478. https://doi.org/10.1038/s41380-018-0343-7 [18] Cohen J. (2018),Neanderthal brain organoids come to life. Science, 360,1284-1284.DOI:10.1126/science.360.6395.1284 [19] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707 [20] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653 [21] Cohen J. (2018),Neanderthal brain organoids come to life. Science, 360,1284-1284.DOI:10.1126/science.360.6395.1284 [22] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653 [23] Sartre, Jean Paul. Being and Nothingness, 1943. https://dx.doi.org/10.4324/9780203827123. [24] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653 [25] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y [26] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y [27] Sartre, Jean Paul. Being and Nothingness, 1943. https://dx.doi.org/10.4324/9780203827123. [28] Schermer, V. I. (2002). Spirit and psyche: A new paradigm for psychology, psychoanalysis and psychotherapy. Jessica Kingsley Publishers. (shrink)

Photo ID 143764115 © Chris Dorney | Dreamstime.com INTRODUCTION Since the repeal of the 18th Amendment in 1933, alcohol consumption has become prevalent among many Americans. Alcohol intoxication is an increasing contributor to emergency room visits wherein individuals present to the emergency department (ED) in an inebriated state, often with secondary injuries or severe medical co-morbidities related to alcohol poisoning. The ED is a stressful environment with providers working under taxing conditions while triaging difficult cases. Alcohol related visits contribute to (...) this added stress for staff given that intoxicated individuals increase wait times for the ED, use up valuable resources, and have the capacity to act violently towards providers. As one nurse puts it, some intoxicated individuals present with “an aggressive state, perhaps have been in a fight, blood everywhere, careening around the place – it can make things very difficult.”[1] To combat these circumstances, thirty-four States including the District of Columbia have implemented a countermeasure recognized as Alcohol Exclusion Laws (AELs). AELs reduce or cut insurance coverage of certain visits to the ED if the cause of the visit is due to alcohol intoxication.[2] The vast implementation of this law is derived from the idea of individual decision making, that it is an individual’s choice to consume alcohol, and therefore they hold a personal responsibility for their intoxication. By using insurance coverage as a leverage, the law aims at reducing the number of ED visits relating to alcohol intoxication, saving resources, and deterring irresponsible drinking. While the intention behind AELs aims for positive change, it is unethical to use AELs, a form of financial leverage, to address certain problems within emergency medicine. ANALYSIS Stigma is prominent in almost all substance abuse cases including those seen with alcohol intoxication. Many patients feel embarrassment or shame when seeking medical attention for a condition that was brought on by alcohol misuse. A personal account by Jonathan Hunt Glassman, a former alcoholic and NBC contributor, emphasizes on this negative bias. He knows firsthand how unsettling an ED visit can be. He felt demoralized from a superficial prognosis made by a nurse on his complex alcohol abuse condition, in which the nurse said, “You need to stop drinking.”[3] Whether it be from shame or insecurities about an individual’s condition, the stigma behind substance abuse cases in the emergency department and the daunting task of asking for help can turn a lot of patients away from seeking and receiving medical treatment. The implementation of Alcohol Exclusion Laws can amplify this already present stigma. A study conducted by the National Institute of Health (NIH) analyzed States that implemented and continued to enforce Alcohol Exclusion Laws and the stigma in those states surrounding alcohol-related ED visits. The result from the study showed that AELs correlated with an increase in stigmatization regarding medical attention for alcohol-related incidents, and that AELs “negatively impact people’s willingness to seek medical care after alcohol-related injuries or illnesses.”[4] Both the NIH study and the personal account by Hunt-Glassman go on to show that AELs have the adverse effect of reinforcing the stigma surrounding alcohol cases in the ED. While the idea behind AELs is in good faith, it contributes to the stigma. This contribution ethically challenges the idea that the emergency room is a space where the treatment of injuries is carried out without biases infringing on such medical care. The mission of EDs is to provide medical care to anyone in need. AELs have the effect of discouraging these patients from seeking help with the unintended consequence of doing them harm. A point of argument for the implementation of AELs is that it is the individual’s choice to be intoxicated and therefore justifiable that an individual receives less insurance coverage for medical expenses from a preventable intoxication. The idea of it being an individual choice to become intoxicated is one of the strongest supports for these exclusion laws. However, it is unjust to assume that all alcohol intoxications come by choice. Instances that disprove this assumption include both the college party scene and bar scene. Spiked drinks significantly increase alcohol concentration and can cause any responsible drinker to become intoxicated without intention or against their will. Additionally, alcoholic beverages served in various social gatherings like those in or around college campuses may not have a clear percentage of alcohol determination. Liquor containing high percentages of alcohol, such as Everclear which contains up to 190 proofs, are often masked by sweeteners and flavorings. Cocktails like these can cause a person to become dangerously intoxicated without their realization or intention. Some may argue that consuming an alcoholic beverage still holds accountability, that the person should be aware of the potential for a tampered drink, and therefore AELs should remain in use to deter this. However, like any law, AELs needs to have defined restrictions and/or exemptions. If the individual choice argument is used in favor for AELs, then how far reaching can the laws be applied? An attorney who specializes in these exclusion laws believes that AELs often offer more ambiguity than clarification when it comes to insurance policy, which leads to further ways insurance claims can be denied.[5] CONCLUSION In summary, the idea behind the use of Alcohol Exclusion Laws aims to reduce intoxication cases in the ED, however, there are drawbacks and aspects of this law that challenge the ethics of seeking medical care from the emergency department. The present stigma surrounding going to the ED for alcohol-related emergencies is already prevalent in hospitals across the country. When applying AELs, the present stigma may be magnified and further push the idea that seeking help for alcohol-related emergencies is shameful and embarrassing for patients, and therefore should be punished via financial means. Secondly, one of the main justifications for AELs is the idea that it is a deliberate intention to become intoxicated. It isn’t always the intention of individuals to get drunk when they choose to consume alcohol. There are additional factors that may play a part to exonerate a person’s accountability. It is difficult for people to recall the specifics of a situation when they become intoxicated; in some cases, accountability cannot be determined and the used of AELs can become unjustified. Overall, Alcohol Exclusion Laws try to solve the issue of alcohol incidents in a way that produces more detriment than progress. A method to combat the issue of irresponsible drinking and intoxication in the emergency room within the US should not use AELs and financial leverage as one of its forefronts. In fact, a study that based its findings obtained from the Behavioral Risk Factor Surveillance System nationwide survey that spanned twenty-four years from 1993-2017, showed no real impact on binge drinking or increased alcohol consumption.[6] Given the downsides to AELs and its proven non-significant effects, several States have already repealed their AELs. For all these reasons, it would be beneficial to find an alternate method to address alcohol related issues within healthcare. - [1] Gregory, A. (16 Jun 2014). Nurses say drunk patients should be banned from A&E as ‘waste of resources’ UK: Mirror. https://www.mirror.co.uk/news/uk-news/nurses-say-drunk-patients-should-3706280 2(Jan 2008). [2] Alcohol Exclusion Laws. National Highway Traffic Safety Administration. https://www.nhtsa.gov/sites/nhtsa.gov/files/810885.pdf. [3] Glassman, J.H. (28 Apr 2022). Why don’t alcoholics get prescribed the medication they need?. NBC. https://www.nbcnews.com/think/opinion/alcohol-related-deaths-er-visits-rose-covid-solution-use- rcna26425. [4] Azagba, S., Ebling, T., Hall, M., (2023). Health claims denial for alcohol intoxication: State laws and structural stigma. Wiley Online Library. https://onlinelibrary.wiley.com/doi/10.1111/acer.15153. [5] (7 Sep 2021). The Alcohol Exclusion Chart Denied Life Insurance Claim. https://www.lifeinsuranceattorney.com/blog/2021/september/the-alcohol-exclusion-state-chart-denied-l ife-in/. [6] Azagba, S., Shan, L., Ebling, T., Wolfson, M., Hall, M., Chaloupka, F., (26 Nov 2022). Does state repeal of alcohol exclusion laws increase problem drinking? National Institutes of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10099925/. (shrink)

Photo ID 117847165© Mohamad Faizal Ramli|Dreamstime.com INTRODUCTION In our cosmic narrative, for centuries we believed the Earth held the universe's center, a belief that shifted with evidence and transformed our understanding of our cosmic place. Correspondingly, paradigms surrounding autism have been shaped by medical assumptions that label it a condition, a disorder, or even a tragedy. Just as our understanding of celestial perceptions evolved, that Earth was not at the center of the universe, it is time for a seismic shift (...) in how we perceive and address autism. ANALYSIS Venturing into autism research, we see the prevailing medical paradigm that defines Autism Spectrum Disorder (ASD) as a developmental disability caused by neurological differences.[1] Social communication, repetitive behaviors, language, movement skills, cognitive abilities, and emotional reactions—all cast as deficits.1 This narrative, embraced by researchers, medical professionals, and society, serves as the foundation of our current understanding. Yet, delving deeper unveils a counter-narrative—one not etched by researchers but articulated by those living with autism. This narrative introduces us to the neurodiversity paradigm, a revolutionary lens that sees autism as a part of the rich tapestry of human neurological development, fostering a stable cognitive landscape.[2] It posits that there is no singular "healthy" brain; and no definitive way of neurocognitive functioning.2 Shockingly, although this perspective is more inclusive, portraying autistic people as crucial contributors to humanity, it remains the more controversial model in society. Contrasting with the classical medical view that treats autism as a disease to be eradicated, the neurodiversity paradigm challenges the notion of normalizing society and underscores the importance of recognizing autism as an advancement. Without it, we would lose invaluable perspectives, strengths in attention to detail, visual perception, creative and artistic talents, mathematical and technical abilities, and expertise in ‘niche’ areas.[3] Asserting that every form of neurological development holds equal validity, deserving of respect and human rights, the neurodiversity paradigm counters the deficit mindset perpetuated by the traditional medical view. The repercussions of our medical-centric assumptions extend beyond perception; they infiltrate the very fabric of societal structures. Autism is labeled a disability. But is it autism that disables individuals, or is it the societal environment that excludes and alienates cognitive diversity? The traditional medical model points fingers at individuals, placing the onus on the differently abled person, not the disabling environments. For example, our societal perspective on disability is largely framed by the medical model, which views disability as an individual problem. According to this model, the disability is located within the person experiencing it—within individuals like me.[4] For instance, I often find myself becoming excessively overstimulated in places like department stores. The bustling environment—loud, brightly lit, unpredictable, and crowded—is a sensory challenge. Following the medical model attributes my struggle in department stores to a perceived problem with the way my brain processes sensory inputs, attributing it to my autism. The consequences of the medical model are far-reaching and profound, particularly in shaping our understanding of autism. This perspective places undue blame on those with autism and directs the focus of research toward "curing" autism rather than addressing societal structures that contribute to exclusion and alienation. One glaring example of this misguided approach is the predominant focus of autism research on finding a cure, as seen in 2020 with a major research theme centered around gene therapies aimed at altering the genetic factors associated with autism-related conditions.[5] Even influential organizations like Autism Speaks, until 2016, subscribed to the notion of seeking a cure.[6] Their evolution, acknowledging the need to listen to the lived experiences of autistic individuals, led to a shift in their mission—from searching for a cure to promoting advocacy, support, understanding, and acceptance.6 This shift highlights the importance of moving away from the medical model. Instead, we should adopt more inclusive models like the neurodiversity or social model of disability, which are rooted in the idea that neurological differences, including autism, are natural variations of the human brain. Listening to the voices of those with autism and embracing the social model of disability allows us to recognize that disabling factors often reside in societal structures, not within the individuals themselves. This paradigm shift is crucial for fostering an inclusive society that values and accommodates cognitive diversity. For instance, when we enter the social model of disability—an alternative lens that shifts the blame from the individual to the environment, it views disability not as a characteristic but as an action done to individuals by society4. In this model, going to a department store is not a struggle for me because there is something inherently wrong with me, but it is a struggle because the environment around me does not cater to my diverse needs. Imagine if our world, including department stores, were designed with neurodiversity in mind—quiet, dimly lit, predictable, and spacious. Neurodivergent individuals would still be cognitively different, but their surroundings would not disable them. Adopting the social model of disability would catalyze shifts in research and attitudes toward autism, reflecting the transformative changes observed in the department store examples. Rather than focusing on changing autistic individuals to fit societal norms, the emphasis would shift to enhancing the lives of neurodivergent people by advocating for structural changes in society. This shift aims to foster inclusivity while preserving individuals' authenticity and embracing their unique differences. Autistic individuals are not seeking a cure for autism because our neurodivergent way of thinking is integral to our identity. Yet, the considerable funding directed toward researching autism's causes for prevention or a "cure" underscores a lack of consideration for our voices in deciding how research funds are utilized. The emphasis on normalization, a cornerstone of the medical model's view of autism, prioritizes societal desires over the well-being of autistic individuals already part of our society. It is imperative to recognize this flaw in research that aims to cure autism, as it risks genetic research for eugenic purposes, necessitating regulation by the autistic community.[7] Redirecting resources from the pursuit of an unwanted cure to research supporting and empowering autistic people to lead fulfilling lives is essential. This redirection involves investing in communication research, offering tools such as communication boards, picture exchange communication systems, speech-generating devices, or sign language for nonverbal or speech-challenged autistic individuals, giving them a voice in our society.[8] Community living research, centered on community inclusion programs, not only provides services but also educates and reinforces accommodations for daily activities such as in schools, workplaces, or even in department stores as stated in the example.[9] Attention to support services for autistic individuals and their families, including residential and day support programs, respite, recreation, and transportation, is crucial.[10] A commitment to promoting lifelong support for autistic individuals necessitates advocating for caregiver support, home and community-based services, financial planning resources, and more.10 Additionally, research aiming to identify qualitative results of adaptation and modification strategies to support inclusive education for autistic students is paramount at school and classroom levels.[11] Research to improve healthcare quality and the healthcare system for autistic individuals is also essential, as they face shorter lifespans and worse health than non-autistics.[12] All these research initiatives align with the principles of the social model of disability. However, as a society that does not follow the social model; the bulk of our understanding of autism is rooted in research driven by medical assumptions and paradigms. In 2022, the United States allocated $306 million to autism research[13]. However, a considerable portion of this research approaches autism as a problem to be solved. An examination of a comprehensive study focused on the allocation of NIH autism research funding from 2008 to 2018 reveals a striking trend. In this distribution, 49.7% of the total funds were allocated to treatment development and evaluation, which represented 53.6% of all projects.[14] This statistic underscores a predominant emphasis on genetic and biological research. However, the goal of such research is not only to understand the underlying reasons for autism so we can cure it. But this research also explores ways of prevention or management of autism through pharmacological treatment or behavioral therapies like intervention or Applied Behavioral Analysis, both of which are intervention models focused on changing the external behaviors of autistic individuals, with the goal of making an autistic person look and act non-autistic.14,[15] Contrastingly, only a minimal fraction of NIH funding—9.1%, approximately $225 million out of nearly $2.5 billion dedicated to ASD research—was channeled towards services-related research.14 This includes critical areas such as improving accessibility and quality of services in the community, characterizing understudied groups, policy development, dissemination, and implementation.14 This glaring discrepancy highlights a diminished emphasis on services research in funding decisions, revealing an imbalanced focus on biological and risk factor research, aiming to eliminate differences rather than seeking ways to integrate accommodations that allow autistic individuals to authentically express themselves within societal structures. The consequence of this skewed prioritization is evident in distressing statistics. Autism affects about 1 in 100 children worldwide, and yet 85% of college-educated adults on the autism spectrum face unemployment—twice the rate of their non-autistic peers.[16],[17] 7 out of 10 autistic individuals wrestle with mental health conditions, including anxiety, depression, ADHD, or OCD.[18] Alarmingly, the suicide rate among autistic individuals is three times higher than the general population.[19] Similarly, individuals with autism have an average life expectancy of 54 years, a staggering 16 years less than the average age of mortality for the general population.[20] And we deserve better. These disheartening realities underscore the urgent need for a paradigm shift in our approach to autism within society. It is crucial to recognize that masking autistic traits is not the optimal outcome for individuals with autism. In fact, hiding autistic traits has been linked to worse mental health outcomes and increased suicidality in autistic adults.15 Services and support systems are required to enable autistic individuals to lead long, happy, and fulfilling lives while respecting their right to be authentically autistic. Embracing neurodiversity is not only a matter of ethical consideration and benefit for autistic individuals but also cultivates progress, acceptance, and overall societal growth for all. CONCLUSION The call for change is clear—we need research initiatives led by autistic individuals, addressing the questions that matter most to the community. We need more autistic individuals in the medical profession to advocate for improvements in the medical perspective. Having only 1% of autistic individuals in the medical profession is no longer enough.[21] Just as the sun is not the center of our universe, individuals with autism are not a tragedy. They deserve a future built on understanding, inclusion, and support. - [1] “Signs and Symptoms of Autism Spectrum Disorders.” Centers for Disease Control and Prevention. Last modified, 28 Mar. 2022, www.cdc.gov/ncbddd/autism/signs.html#:~:text=Autism%20spectrum%20disorder%20(ASD)%20is,%2C%20moving% 2C%20or%20paying%20attention. [2] Robinson, John Elder. “What Is Neurodiversity?” Psychology Today, Sussex Publishers, 7 Oct. 2013, www.psychologytoday.com/us/blog/my-life-aspergers/201310/what-is-neurodiversity. [3] “Focus on Strengths as Well as Challenges.” Autistica, 17 Oct. 2019, www.autistica.org.uk/news/focus-on-strengths-and-challenges. [4] “Office of Developmental Primary Care.” Medical and Social Models of Disability | Office of Developmental Primary Care. Accessed 26 Oct. 2023, https://odpc.ucsf.edu/clinical/patient-centered-care/medical-and-social-models-of-disability. [5] “Hot Topics in Autism Research, 2020.” Spectrum, 3 Mar. 2023, www.spectrumnews.org/features/hot-topics-in-autism-research-2020/#:~:text=Gene%20scene,be%20administ ered%20early%20in%20life. [6] “Questions and Answers.” Autism Speaks. Accessed 26 Oct. 2023, www.autismspeaks.org/autism-speaks-questions-answers-facts#:~:text=It%20was%20the%20right%20decision ,research%20for%20the%20autistic%20community. [7] “Research.” Autistic Self Advocacy Network, 31 Aug. 2023, autisticadvocacy.org/research. [8] “7 Autism Behavior and Communication Strategies.” National University, 23 Sept. 2021, www.nu.edu/blog/7-autism-behavior-and-communication-strategies/#:~:text=Strategy%20%231%3A%20Using%2 0Communication%20Boards,photographs%2C%20illustrations%2C%20or%20symbols. [9] “Inclusion: Ensuring Access for Everyone.” Autism Speaks. Accessed 26 Oct. 2023, www.autismspeaks.org/tool-kit-excerpt/inclusion-ensuring-access-everyone. [10] “Support for Family Members.” Autism Speaks. Accessed 26 Oct. 2023, www.autismspeaks.org/autism-support-family-help#:~:text=People%20with%20autism%20and%20the,%2C%20rec reation%2C%20transportation%20and%20others. [11] Petersson-Bloom, Linda, and Mona Holmqvist. “Strategies in Supporting Inclusive Education for Autistic Students-A Systematic Review of Qualitative Research Results.” Autism & Developmental Language Impairments, U.S. National Library of Medicine, 21 Sept. 2022, www.ncbi.nlm.nih.gov/pmc/articles/PMC9620685/. [12] Weir, Elizabeth, et al. “Autistic Adults Have Poorer Quality Healthcare and Worse Health Based on Self-Report Data - Molecular Autism.” BioMed Central, BioMed Central, 26 May 2022, molecularautism.biomedcentral.com/articles/10.1186/s13229-022-00501-w. [13] Mikulic, Matej. “Research Funding for Autism by U.S. NIH 2011-2024.” Statista, 2 June 2023, https://www.statista.com/statistics/1237464/autism-research-funding-united-states-by-nih/#:~:text=In %20fiscal%20year%202022%2C%20research,U.S.%20dollars%20back%20in%202016. [14] Cervantes, Paige E, et al. “Trends over a Decade in NIH Funding for Autism Spectrum Disorder Services Research.” Journal of Autism and Developmental Disorders, U.S. National Library of Medicine, 10 Oct. 2020, www.ncbi.nlm.nih.gov/pmc/articles/PMC8035332/#:~:text=Funding%20for%20treatment%20development%2Feval uation,averaging%20%2410.2%20million%20per%20year. [15] For Whose Benefit? - Autistic Self Advocacy Network. Accessed 26 Oct. 2023, https://autisticadvocacy.org/wp-content/uploads/2021/12/ACWP-Ethics-of-Intervention.pdf. [16] “Data & Statistics on Autism Spectrum Disorder.” Centers for Disease Control and Prevention. 4 Apr. 2023, www.cdc.gov/ncbddd/autism/data.html. [17] Peralta, Paola. “85% of Adults on the Autism Spectrum Are Unemployed - and Hiring Practices May Be to Blame.” Employee Benefit News. 10 Aug. 2023, www.benefitnews.com/news/how-to-create-equitable-workplace-experiences-for-autistic-talent#:~:text=8 5%25%20of%20adults%20on%20the,practices%20may%20be%20to%20blame. [18] “Autism and Mental Health.” Mental Health Foundation. Accessed 26 Oct. 2023, www.mentalhealth.org.uk/explore-mental-health/a-z-topics/autism-and-mental-health#:~:text=Just%20lik e%20everyone%2C%20autistic%20people,%2Dcompulsive%20disorder%20(OCD). [19] Welch, Ashley. “Rate of Suicide 3 Times Higher for Autistic People.” Healthline, Healthline Media, 2021, www.healthline.com/health-news/rate-of-suicide-3-times-higher-for-autistic-people. [20] Elemy. “Why Do People with Autism Have a Lower Average Lifespan?” Elemy, 2021, https://elemy.wpengine.com/autism/average-lifespan. [21] “Doctors with Autism Speak out against Stigma.” Spectrum, 10 Mar. 2023, www.spectrumnews.org/news/doctors-with-autism-speak-out-against-stigma/#:~:text=The%20condition%20is %20typically%20diagnosed,worry%20they%20will%20be%20stigmatized. (shrink)

Photo ID 129550171© Katarzyna Bialasiewicz|Dreamstime.com INTRODUCTION One night in 2016, I fell sound asleep, then awoke to painkiller-induced, nightmarish hallucinations in the ICU. Despite being unable to identify myself or surroundings, I can clearly remember the discordant beeping of hospital monitors, acrid smell of saline wash, and taste of sickly sweet orange amoxicillin syrup. I was unaware that, the morning after I’d fallen asleep, I’d skied off an unmarked 30-foot cliff, breaking my legs, jaw, eye socket and nose, rupturing my (...) right ear canal, and shattering nearly all of my teeth. Over the years that followed, I was fortunate enough to receive care from skilled, compassionate physicians. This not only allowed me to return to ski racing, but to dream of becoming a surgeon. Having grown older and thus more aware throughout my years as a pediatric patient, I’ve developed a nuanced understanding of what treatment made me feel heard. In fact, I found the most radically varying aspect of my care to be the degree to which I was addressed as a conscious, capable individual versus an extension of my parents. This is unsurprising as the proper amount of authority lended to pediatric patients persists as highly disputed in bioethics. Over the course of this paper, several perspectives will be considered in order to evaluate the current position of the pediatric patient in medical decision-making. First, the ambiguity of maturity and reactions to pediatric autonomy will be considered through the Mature Minor Doctrine, especially important in the refusal of life-saving therapies. Next, the need for improved pain management, rooted in the misalignment of experienced and perceived pain in pediatric patients. Finally, this paper will prove, through the lenses of communitarianism and mosaic decision-making, the need for a more nuanced approach to pediatric care that structurally accounts for the patient’s voice without neglecting their place within a greater network. Therefore, there exists a great need for a more direct, balanced integration of pediatric patients’ as well as revisiting prevailing notions of where pediatric patients stand in relation to reason and experience. ANALYSIS To begin, Fleischman’s Pediatric Ethics opens with an exploration of what makes pediatric bioethics distinct.[1] Fleischman quickly runs into the most problematic of principles in the treatment of pediatric patients– autonomy. The ethical ambiguity of the degree of autonomy to offer pediatric patients and at what point in their lives is a central point of conflict. Many in favor of expanded authority point to the neurobiological similarity between young adults and late teenagers.[2] Furthermore, while parents are treated as natural decision-makers for their children, there are several cases of minors facing pressure to undergo medical treatment against their wishes.[3],[4] In response to these concerns, the Mature Minor Doctrine was created, a common law exception to the parental consent requirement. The doctrine allows a minor “to refuse or consent to medical treatment if [they possess] sufficient maturity to understand and appreciate the benefits and risks of the proposed medical treatment.”[5] The doctrine has spurred extensive and impassioned bioethical discourse, especially in relation to the refusal of life-saving therapies. In “Health Care Decisionmaking by Children'', Ross draws a clear distinction between the notion of competence, often cited in psychological justifications of the Mature Minor Doctrine, and sound judgment.[6] Her points against child liberationists can be simplified as follows: (a) children need time to develop virtues that preserve their life-time autonomy versus their present-day autonomy, (b) pediatric patients possess “limited world experience and so [their] decisions are not part of a well-conceived life plan,”[7] and (c) it serves parents and children alike for parents to make decisions in line with their view of a good life. I find all three points convincing, but each of them to be uniquely rooted in this same, critical lack of experience possessed by pediatric patients. I can attest to this. There were times where I suffered so desperately that I longed for relief by any means. I even told my mother that I was content only hearing out of one ear, willing to do anything to prevent another surgery. Now, I am fearful to imagine a world where, at my lowest, I had full autonomy. Hence, the broad aversion to expanded pediatric autonomy is largely rooted in potential misuse, especially in the possibility of a unilateral, misinformed decision in favor of death via refusal of life-sustaining therapy.[8],[9] Yet, one might argue, the desire for death has concrete rationale beyond lack of life experience— pain and suffering. As Foley describes, “The public's fear of pain and the media's portrayal that physician-assisted suicide and euthanasia are the only reliable options for pain relief… demand that health care delivery systems commit their efforts to improve pain relief at an institutional level.”[10] Indeed, the issue of insufficient pain management is all too common in pediatrics. One study comparing postoperative pain assessments surveyed 307 patients, 207 of whom were verbal. Across the board, nurses’ pain estimations produced significantly lower pain scores than parents and children, and were consistently closer to estimated pain scores of independent observers.[11] In another study, a total of 356 nurses across 22 Japanese PICUs were surveyed, and despite possessing a median of 4 years of experience, a mere 32.6% expressed confidence in their ability to accurately assess pain.[12] It is alarming and telling that even in verbal pediatric patients, pain is significantly underestimated by medical personnel, reflecting a real gap in pediatric patient-professional communication. I can, again, personally attest to this. In the children’s ward, I was offered only Tylenol for severe nerve pain in my legs that kept me awake most nights. Relatedly, the spirited debate in response to the Mature Minor Doctrine is somewhat disproportionate. Despite the suggestion of various commentators that the law broadly recognizes the doctrine or that states are trending in its direction, only eight states have adopted a mature minor exception, and even these states condition this authority greatly.[13] With this in mind, a crucial issue is illuminated– an aversion to the pediatric patient voice altogether. As Flesichman writes, “Children should be informed about the nature of their condition, the proposed treatment plan, and the expected outcome… appropriate to their developmental levels.”[14] Hence, it is vital to curtail pediatric autonomy in complex and life-threatening choices, but it is worth seriously considering that the current landscape might excessively minimize or avoid pediatric patients’ expression, merely serving to inform them rather than account for their voice. The experience that pediatric patients do possess, in the form of knowing their body, past medical experiences, and thus present pain-related needs, is systemically underrepresented. This is a pressing issue. Before considering expansion of the pediatric voice, though, it is first important to consider the manner in which the patient’s capacity is further complicated by their role within a larger community. It is worthwhile explicitly mentioning communitarianism, a prevailing school of thought in modern bioethics, defined by Callahan as “a way of… assum[ing] that human beings are social animals… and whose lives are lived out within deeply penetrating social, political, and cultural institutions and practices.”[15] Pediatric patients present a uniquely communitarian case as the perspectives of parents and the needs of patients’ families are vital considerations in offering care. The pediatric patient’s role in a larger family unit and community should be kept in focus so long as the well-being of the patient isn’t compromised, such as in potentially life-threatening religious preferences, as the obligation of the physician is, first and foremost, to the patient. Nonetheless, the status quo demands a more thoughtful and structural accounting of the pediatric voice to ensure that they feel heard and empowered in complex decision-making and regular care alike. Hence, it is necessary to develop and evaluate clinical models and frameworks that directly account for the pediatric voice, that integrate pediatric patients’ input as continuous, regular, and required elements of treatment. For instance, there may be promise in a model similar to that of mosaic decision-making, a means of restoring the capacity of reemergent patients following brain injury. Rather than enabling complete surrogate authority, the model would enable a pediatric patient’s emergent voice to be accommodated but to not “speak beyond its range and capabilities” via group deliberation between surrogate and patient, a medical professional, and a patient advocate.[16] Opting for such a model would enable the active involvement of pediatric input without excessively empowering the patient in a manner that neglects their communitarian role and lack of experience. CONCLUSION In the heated response to the largely unenforced mature minor doctrine, one finds the invaluable and lacking factor of experience in pediatric patients, especially in decisions to withdraw or refuse life-sustaining medical treatments. In this same response, however, one finds a sharp aversion to the pediatric voice, reflected in pervasive under-medication. Deficits in pain management must be addressed to more effectively treat discomfort, an effort bolstered by a more structural accounting of the pediatric voice and thus pain-related needs. Finally, frameworks that regularly involve the pediatric patient perspective while valuing their communitarian importance and lacking experience, such as the mosaic model, hold real promise moving forward. - [1] Fleischman, Alan. Pediatric Ethics: Protecting the Interests of Children. (Oxford: Oxford University Press, September, 2016), p. 1-16. [2] Coleman, Doriane & Rosoff, Philip. “The Legal Authority of Mature Minors to Consent to General Medical Treatment.” (Itasca: American Journal of Pediatrics, March 2013), p. 1. [3] Hawkins, Susan. “Protecting the Rights and Interests of Competent Minors in Litigated Medical Treatment Disputes.” (New York: Fordham Law Review, March 1996), p. 1. [4] Derish, Melinda & Heuvel, Kathleen. “Mature Minors Should Have the Right to Refuse Life-Sustaining Medical Treatment.” (Boston: The Journal of Law, Medicine & Ethics, January 2021), p. 1-14. [5] Derish, Melinda & Heuvel, Kathleen. “Mature Minors Should Have the Right to Refuse Life-Sustaining Medical Treatment.” p. 7. [6] Ross, Lainie. “Health Care Decisionmaking by Children. Is It in Their Best Interest?” (Garrison: The Hastings Center Report, November-December 1997), p. 1-5. [7] Ross. “Health Care Decisionmaking by Children''. p. 5. [8] Penkower, Jessica. “The Potential Right of Chronically Ill Adolescents to Refuse Life-Saving Medical Treatment - Fatal Misuse of the Mature Minor Doctrine.” (Chicago: DePaul Law Review, 1996), p. 1-8. [9] Burk, Josh. “Mature Minors, Medical Choice, and the Constitutional Right to Martyrdom.” (Charlottesville: Virginia Law Review, September 2016), p. 1-15. [10] Foley, Kathleen. “Pain Relief Into Practice: Rhetoric Without Reform.” (Alexandria: Journal of Clinical Oncology, 1995), p. 1-3 [11] Hla et. al. “Perception of Pediatric Pain: A Comparison of Postoperative Pain Assessments Between Child, Parent, Nurse, and Independent Observer.” (Melbourne: Pediatric Anesthesia. 2014) p. 1-5. [12] Tsuboi et. al. “Nurses' perception of pediatric pain and pain assessment in the Japanese PICU.” (Tokyo: Pediatrics International, February 2023), p. 1-3, 10-12. [13] Coleman, Doriane & Rosoff, Philip. “The Legal Authority of Mature Minors”. p. 1-3. [14] Fleischman, Alan. Pediatric Ethics. p. 115. [15] Callahan, Daniel. “Principlism and communitarianism.” (Garrison: The Hastings Center Report, October 2003), p. 2. [16] Fins, Joseph. “Mosaic Decisionmaking and Reemergent Agency after Severe Brain Injury”. (Cambridge: Cambridge University Press, September 2017), p. 6. (shrink)

Background Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality. However, the ethical implications of screening for disease risk factors are unclear and the current literature provides a fragmented and case-by-case picture. Methods To identify key ethical considerations (...) arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher’s Index databases were searched for peer-reviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers. Results After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals. Conclusions The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies. (shrink)

Background and Objectives: Emergency medical technicians (EMTs), as the front line of dealing with patients with COVID-19, are exposed to the intensification of stress caused by these conditions, and it is essential to identify related factors, such as resilience and spiritual intelligence in this context. This study was conducted to determine the relationship between perceived stress, spiritual intelligence, and resilience of EMTs during the COVID-19 pandemic. Methods: This cross-sectional study was conducted on 108 EMTs in Shahroud in 2021. Data collection (...) tools included the demographic checklist, Cohen’s perceived stress questionnaire, King’s spiritual intelligence questionnaire, and Conrad Davidson’s questionnaire (CD-RISC). To analyze the data, descriptive and inferential (independent t-test, Pearson correlation, and multiple regression) statistics were used. Results: The mean scores of perceived stress and resilience of employees were at medium and high levels, respectively. There was no significant relationship between perceived stress and spiritual intelligence (r=-0.49, P=0.24), but there was a meaningful negative correlation between perceived stress and resilience (r=-0.31, P=0.002). A positive and significant relationship was observed between perceived stress score and age and work experience. Conclusion: Considering the significant relationship between perceived stress and resilience in the present study, it is suggested that the administrators provide solutions such as creating training courses to manage stress and increase resilience in EMTs. (shrink)

Background and Objectives: Moral sensitivity is the ability to recognize moral conflicts and consequences in decisions, and anxiety sensitivity is a structure of individual differences, in which a person fears physical symptoms associated with anxiety arousal. Anxiety sensitivity is vital in the persistence of anxiety disorders. This study was done to determine the relationship between moral sensitivity and anxiety sensitivity in nursing students of Tehran University of Medical Sciences. Methods: This research was descriptive-correlational. The samples included 336 nursing students in (...) all grades at Tehran Universities of Medical Sciences in 2020. Sampling was performed continuously using virtual space. In this research, the demographic information form, Moral Sensitivity Questionnaire (MSQ), and Anxiety Sensitivity Index (ASI) were used. Data were analyzed using SPSS software, version 16 and analytical and descriptive tests, such as Kruskal-Wallis and Mann-Whitney U tests. Results: The score of moral sensitivity and anxiety sensitivity was obtained as 81 and 31.4, respectively. The correlation coefficient between moral sensitivity and anxiety sensitivity was not statistically significant (r=0.065; P=0.238). Also, the two components of fear of physical concerns had a significant relationship with the dimensions of benevolence and honesty. Conclusion: Considering that the lack of interest in the nursing field increases anxiety sensitivity, it is suggested to activities be done to improve interest in nursing among students. Despite the lack of a significant relationship between these two components, the importance of these two components should not be neglected and it is better to carry out studies to better understand the factors affecting moral sensitivity and anxiety sensitivity and to improve these two components. (shrink)

Background and Objectives: One of the non-pharmacological interventions is gratitude, which has received less attention in the neonatal intensive care unit (NICU). The present study was conducted to investigate the effect of an educational intervention based on gratitude on the stress and mental health of mothers with preterm infants hospitalized in the NICU. Methods: A quasi-experimental controlled study was conducted on 50 mothers with infants hospitalized in the NICU of Shahrekord City, Iran, who were divided into two intervention and control (...) groups. The intervention group was trained by the researcher in three two-hour sessions every week for two weeks. The results related to mothers’ general health and stress were analyzed by the parental stress questionnaire and Goldberg and Hiller’s general health questionnaire (GHQ-28) before and after the intervention by the paired t-test. Results: The mean stress score of mothers in the intervention group significantly reduced (P 0.05) (before training: 35.72 and after training: 34.08). In the intervention group, the mean score of mental health improved significantly two weeks after the gratitude-based training program (P<0.05) (before training: 26.56 and after training: 19.20). Conclusion: This is the first study on the effectiveness of gratitude on the health of Iranian mothers with preterm infants hospitalized in the NICU. Gratitude improves the stress level and increases the quality of mental health. The belief that gratitude will increase blessings is a crucial part of Iranian women’s religious beliefs and is a critical factor in the effectiveness of mind and body interventions. (shrink)

Background and Objectives: Spiritual health has a positive effect on the way of interaction, organizational belonging, and job commitment of people. Therefore, it is expected that in sensitive jobs, such as pharmacy and prescribing medicine for patients, errors will be reduced and patient safety will be improved. This study was conducted to investigate the relationship between spiritual health and job performance among pharmacists and pharmacy staff in Qom Province in 2017-2018. Methods: This cross-sectional study was carried out on a total (...) of 140 staff of pharmacies in Qom. The performance measurement tool was Paterson’s occupational performance questionnaire. Along with demographic information, the state of spiritual health was also evaluated using an authentic Iranian questionnaire. The data were analyzed using an independent t-test and Pearson’s correlation coefficient. Results: The mean age and work experience of the participants were 31.05±8.3 and 7.94±7.4 years, respectively. The total score of occupational performance and spiritual health was obtained as 70±10 and 211.9±23.6, respectively. The results of the Pearson correlation coefficient showed a statistically significant relationship between spiritual health and job performance (P<0.01). Conclusion: Considering the existence of a relationship between the spiritual health of personnel and job performance, it can be concluded that by improving the level of the spiritual health of the personnel working in the pharmacy, the effectiveness factors of organizational behavior will improve. It is recommended that more research be done in the field of job performance improvement. (shrink)

Background and Objectives: Sleep disorders are prevalent in the geriatrics. Any disorder in its natural flow causes psychological problems and decreases the efficiency of a person. Paying attention to the spiritual forces in the elderly is a need that gives them peace and vitality; therefore, spiritual health can improve the quality of sleep in the geriatrics by promoting general health, which is a requirement for comfortable sleep. Therefore, we examined the correlation between spiritual health and sleep quality in geriatrics. Methods: (...) This research was a cross-sectional descriptive-analytical study conducted on 161 elderly in Jahrom City, Iran, in 2017. The standard spirituality wellbeing scale (SWBS) by Palutzian and the Pittsburgh sleep quality index (PSQI) were used. After collecting data, they were analyzed using descriptive statistics and the chi-square test by SPSS software, version 16. Results: The results showed that 54% of the participants in the research were male and the average age of the participants was 62.96±2.5 years. The average scores of spiritual health and sleep quality in the participants were 79.62±5.1 and 6.53±3.5, respectively. Also, no significant relationship was observed between spiritual health score and sleep quality in the elderly (P=0.43). Conclusion: Considering that the spiritual health of most elderly was at an average level and most of them had sleep disorders, it is recommended that the factors related to improving the spiritual health and quality of sleep in this segment of society be considered. (shrink)

Background and Objectives: Considering the lack of information about the ethical principles required to obtain informed consent, this issue should be given more attention by researchers. This study aims to extract the rich experiences of researchers regarding obtaining informed consent to participate in human research and its facilitating factors. Methods: This qualitative study was conducted with the content analysis approach in 2023. Using targeted sampling, 17 researchers from the Qom University of Medical Sciences were selected, and quasi-structured and individual interviews (...) were conducted until data saturation. Data were analyzed simultaneously with data collection using the Granheim and Lundman method. Results: According to the results of this study, based on the nature of the study, researchers can use any of the written, oral, or electronic methods to obtain informed consent. The researchers believed that the principles of obtaining informed consent include voluntariness, avoiding coercion, the existence of two-way interaction between the researcher and the research samples, and providing necessary information to the research samples. According to researchers’ experiences, the factors that facilitate obtaining informed consent include establishing effective communication with researchers and samples, the appropriateness of the text of the informed consent, preparing a multimedia file of the informed consent, holding training courses, and having clear and up-to-date instructions. Conclusion: The principles of obtaining informed consent and the facilitating factors mentioned in this research can help researchers observe this critical aspect of ethics in research. (shrink)

Background and Objectives: Some studies have shown that spirituality and religion are related to more life satisfaction and less depression. The present study examined the effectiveness of Islamic cognitive-behavioral therapy (CBT) compared to conventional CBT in reducing depression and increasing life satisfaction and spiritual health in patients with depression. Methods: This is a random trial with a pre-test-post-test design. There were 30 participants in this study; 15 participants received conventional CBT and 15 received Islamic CBT. The instruments used for data (...) collection included a semi-structured interview based on diagnostic and statistical manual of mental disorders, 5th edition (DSM-5), Glock and Stark’s (1970) Religiosity Scale, Beck’s depression inventory, Diner’s life satisfaction questionnaire (1985), and Paloutzian’s spiritual wellbeing scale, which were filled in before and after the treatment sessions. Each protocol included ten 50-minute sessions. The collected data were finally analyzed using multivariate analysis of covariance (MANCOVA). Results: Islamic CBT led to a significantly higher level of spiritual health compared to conventional CBT (P<0.001). Both methods led to a significant reduction in depression and increased life satisfaction and no significant difference was found between them. Conclusion: It is suggested that Islamic CBT should be improved in terms of psychological components and techniques combined with spirituality so that its effectiveness in reducing depression and increasing life satisfaction can be improved compared to conventional CBT. (shrink)

Background and Objectives: Spiritual coping strategies of patients are influenced by their mood/anxiety symptoms and emotional schemas. Therefore, the present study aimed to develop a conceptual model of spiritual coping in patients with chronic back pain, considering the role of mood/anxiety symptoms and emotional schemas. Methods: The research method was descriptive correlational. The statistical population included all women and men 25 to 55 years old with chronic back pain referring to the orthopedic and neurology clinics of Torbat Heydarieh City, Iran, (...) in 2021-2022, of whom 400 people were selected considering the inclusion criteria using the convenience method. The tools used were the mood and anxiety symptoms questionnaire (MASQ-D30), a brief version of the Leahy emotional schema scale II-(LESS II), and the religious coping scale. The data were analyzed by structural equation modeling by SPSS software, version 24 and LISREL software, version 8.8. Results: The fitted model showed a direct relationship between mood/anxiety symptoms and emotional schemas (β=0.740), an inverse relationship between mood/anxiety symptoms and spiritual coping (β=-0.480) at the significant level of 0.05, and an indirect relationship between mood/anxiety symptoms and spiritual coping through emotional schemas (β=-0.488), which was significant at the 0.05 level. Conclusion: The results of the study supported the mediating role of emotional schemas in the relationship between mood/anxiety symptoms and spiritual coping strategies of patients with chronic back pain. Therefore, developing therapeutic interventions to reduce emotional schemas and improve spiritual coping strategies along with medical treatments is useful in adapting and improving chronic pain sufferers. (shrink)

Background and Objectives: Nurses often face many challenges in life which negatively affect their well-being. This study aims to investigate the mediating role of self-transcendence in the relationship between psychological vulnerability and work-related well-being of nurses in Birjand City, Iran. Methods: The present study was a descriptive correlation with the structural equation modeling (SEM) approach. The statistical population included 795 public hospital nurses in Birjand City, Iran in 2020. The research sample included 440 people selected using the convenience sampling method. (...) Data collection tools included the psychological vulnerability scale, the subscale self-transcendence and character questionnaire, and the work-related well-being scale. The data were analyzed using the SEM approach, SPSS software, version 22 and LISREL software, version 8.8. Results: The results showed that the direct path of psychological vulnerability to spiritual acceptance, creative self-forgetfulness and transpersonal identity was negative and significant (P<0.01). The direct path of self-forgetfulness, transpersonal identity, and spiritual acceptance to work-related well-being was positive and significant (P<0.01). Also, the indirect route of psychological vulnerability to work-related well-being through spiritual acceptance, self-forgetfulness, and transpersonal identity was significant (P<0.01). Conclusion: The results of the study indicate that self-transcendence can play a significant indirect role in reducing the adverse effects of psychological vulnerability on nurses’ work-related well-being. Therefore, using the self-care training program based on the theory of self-transcendence, it is possible to improve the three dimensions of self-transcendence of nurses, increase their work well-being, and reduce their psychological vulnerability. (shrink)

Background and Objectives: Improving or reducing the stress caused by cancer in patients is possible with different psychological approaches. Therefore, we compared the effectiveness of spiritual therapy and acceptance and commitment therapy on life expectancy (LE) and quality of life (QoL) of cancer patients. Methods: This quasi-experimental study with the pre-test and post-test and follow-up design and a control group was conducted in 2020, in which we randomly selected 45 cancer patients admitted to the Taleghani Hospital in Kermanshah Province who (...) were divided into three groups: spiritual therapy, acceptance and commitment therapy, and control groups. After the treatment, we compared the three groups’ scores on the QoL questionnaire and LE questionnaire by Schneider by SPSS software, version 20 and analysis of covariance. Results: The mean age of patients was 28±14 years. A family history of cancer was observed in 14% of patients. There were no significant differences in the pre-test (17.04±2.35) and post-test (18.19±2.11) scores of LE in the control group. The results of the analysis of covariance showed a significant difference (P<0.01) between the post-test scores of QoL and LE in the treatment groups compared to the control group. Conclusion: Both types of treatments were effective in patients and increased their QoL and LE. However, spiritual therapy had a greater effect on the QoL and LE among cancer patients compared to acceptance and commitment therapy. (shrink)

Background and Objectives: This study aims to investigate whether a relationship is observed between spiritual health and health literacy among female teenagers, especially in terms of their attitudes toward breast self-examination. Methods: This study was a cross-sectional survey. Using multi-stage cluster sampling, 600 female students in grades 10 and 11 were chosen. A standard health literacy questionnaire created by Montazeri et al. and a 20-item spiritual health questionnaire created by Paloutzian and Ellison were used. Data were analyzed using SPSS software, (...) version 22. Results: Most respondents had moderate health literacy and spiritual health with a positive and significant correlation (r=0.32). Health literacy has also been linked to maternal education and lower social class affiliation. Spiritual health was shown to be the vital variable in explaining health literacy in the regression. Conclusion: The research results showed the importance of spiritual health in health literacy and attitude towards health and preventive behaviors. Policymakers should give much more importance to spiritual health, especially in existential and non-ritual religious forms, in designing preventive interventions. (shrink)

Background and Objectives: This study aimed to investigate the psychometric properties of the Iranian-Islamic spiritual well-being questionnaire (SWBQ), which involves 22 items adapted to the Iranian cultural context. Methods: The current study was descriptive-analytical. After designing the questions according to the Iranian-Islamic culture based on the literature review, the content validity was examined by experts (five people with a PhD in psychology), and the content validity index (CVI) and content validity ratio (CVR) indices were used to check the quantitative content (...) validity. To check the face validity, ten people aged 18 to 60 were used as a sample. Also, exploratory and confirmatory factor analysis was used to check construct validity, and Cronbach’s α, test re-test, and Spearman-Brown and Guttman split-half coefficients were used to check reliability. In examining the construct validity and reliability of the questionnaire, 400 adults aged 18 to 60 years were selected and assessed as a sample from Mashhad City in 2021 by available sampling. Results: The CVR for five experts was obtained to be >0.99, and the CVI for 22 terms of the questionnaire was obtained ≥0.79, which is in the desired range. The exploratory factor analysis identified six factors, which together explained 77.25% of the total variance. The results obtained from the confirmatory factor analysis supported the proposed model. The Cronbach’s α coefficient of the Iranian-Islamic SWBQ and its factors was obtained from 0.77 to 0.91. In the split-half method, Spearman-Brown and Guttman correlation coefficients were 0.88 and 0.87, respectively. The test re-test reliability coefficients of the total score of the questionnaire and subscales were between 0.78 and 0.83. Conclusion: It can be concluded that the Iranian-Islamic SWBQ has favorable psychometric properties. (shrink)

Background and Objectives: Spirituality and spiritual beliefs are among the factors playing key roles in preventing psychological disorders. The present study aimed to investigate the relationship between depression symptoms with emotional divorce and spiritual beliefs using artificial neural networks (ANN) in married university students. Methods: The statistical population of this descriptive-correlational study included all married students at the Islamic Azad University of Ahvaz (Khuzestan Province, Iran) during the 2021–22 academic year. The convenience sampling technique was adopted to select 301 married (...) students as the research sample. An ANN was employed and data collection was done using the Beck’s depression inventory, emotional divorce scale, and religious orientation scale. Data analysis was performed through the Pearson correlation coefficient, stepwise regression, and an ANN. Results: The results showed a significant positive relationship between emotional divorce and depression symptoms, whereas there was a significant negative relationship between intrinsic religious beliefs and depression symptoms (P<0.001). However, a significant positive relationship existed between extrinsic religious beliefs and depression symptoms (P<0.001). Furthermore, depression symptoms were associated with emotional divorce and intrinsic/extrinsic religious beliefs in married university students. The results of the ANN also showed that emotional divorce had the most relationship with the depression symptoms of married students. Conclusion: The ANN appropriately predicted depression symptoms through an emotional divorce and spiritual beliefs among married university students. The results indicated the necessity of paying more attention to marital relationships, emotional divorce improvement, and depression alleviation. (shrink)

Background and Objectives: Paying attention to religious beliefs is not a new approach but has attracted the attention of various scientists for many years, both to analyze the reasons for turning to religion and in the direction and manner of its impact on behavior. The more people pay attention to strengthening their beliefs, religious beliefs, and religious behaviors, the better they can protect themselves from psychological harm. Therefore, this study aims to explain the religious strategies of parents of infants admitted (...) to the neonatal intensive care unit (NICU). Methods: This qualitative study was conducted in 2020. The statistical population included parents and nurses. The research sample was selected by purposeful sampling, including 16 mothers, 6 fathers, and 6 nurses. Data were collected via in-depth quasi-structured interviews. Data analysis was performed by conventional qualitative content analysis. Results: Data analysis was obtained in three categories, search for hope and trust in God (2 categories), neglect of the health team to the spiritual needs of parents (2 categories), spirituality, and coping with illness (2 categories). Conclusion: The results of this research can be useful at both theoretical and practical levels. The present study helps to improve healthcare team knowledge about parents’ religious strategies in the NICU. Educational interventions should be performed to familiarize nurses with the correct communication with parents’ religious beliefs. (shrink)