Genetic Ethics

Value change is a phenomenon that is gaining increasing attention in ethical analyses of technologies. However, a comprehensive study of how reprogenetic technologies and values coevolve is lacking. To remedy this gap, in this overview article, I address the relationship between reprogenetics and value change. This contribution thus argues for the importance of investigating the phenomenon of value change in relation to the technological controversies discussed in bioethics. To meet this goal, I begin by clarifying, first, how technologies shape reproductive (...) choice. I then clarify what “values” and “moral values” are, how reprogenetic technologies are value laden, and what values are often discussed in reprogenetics debates. Next, I show five types of value changes that have occurred in advance in reproductive and genetic technologies. Finally, I argue for the bioethical relevance of discussing future techno-value change, pointing out the descriptive and normative challenges of this philosophical endeavor. (shrink)

Value change is a phenomenon that is gaining increasing attention in ethical analyses of technologies. However, a comprehensive study of how reprogenetic technologies and values coevolve is lacking. To remedy this gap, in this overview article, I address the relationship between reprogenetics and value change. This contribution thus argues for the importance of investigating the phenomenon of value change in relation to the technological controversies discussed in bioethics. To meet this goal, I begin by clarifying, first, how technologies shape reproductive (...) choice. I then clarify what “values” and “moral values” are, how reprogenetic technologies are value laden, and what values are often discussed in reprogenetics debates. Next, I show five types of value changes that have occurred in advance in reproductive and genetic technologies. Finally, I argue for the bioethical relevance of discussing future techno-value change, pointing out the descriptive and normative challenges of this philosophical endeavor. (shrink)

Creating Future People offers readers a fast-paced primer on how new genetic technologies will enable parents to influence the traits of their children, including their intelligence, moral capacities, physical appearances, and immune systems. It deftly explains the science of gene editing and embryo selection, and raises the central moral questions with colorful language and a brisk style. Jonathan Anomaly takes seriously the diversity of preferences parents have, and the limits policymakers face in regulating what could soon be a global market (...) for reproductive technology. He argues that once embryo selection for complex traits happens it will change the moral landscape by altering the incentives available to parents. All of us will take an interest in the traits everyone else selects, and this will present coordination problems that previous writers on genetic enhancement have failed to consider. Anomaly navigates difficult ethical issues with vivid language and scientifically-informed speculation about how genetic engineering will transform humanity. Key Features: Offers clear explanations of scientific concepts Explores important moral questions without academic jargon Brings discoveries from different fields together to give us a sense of where humanity is headed. (shrink)

Creating Future People offers readers a fast-paced primer on how advances in genetics will enable parents to influence the traits of their children, including their children's intelligence, moral capacities, physical appearance, and immune system. It explains the science of gene editing and embryo selection, and motivates the moral questions it raises by thinking about the strategic aspects of parental choice. Professor Anomaly takes seriously the diversity of preferences parents have, and the limits policymakers face in regulating what will soon be (...) a global market for reproductive technology. Anomaly argues that once embryo selection for complex traits happens it will change the moral landscape by altering the incentives each person faces. All of us will take an interest in the traits everyone else selects, and this will present coordination problems that previous writers on genetic enhancement have failed to consider. Anomaly ends by considering how genetic engineering will transform humanity. Key Updates to the Second Edition · Significant revisions to the Preface and three separate chapters to include more details about what will be scientifically possible in the coming years and the moral issues these developments will raise · New and substantial coverage of embryo selection (guided by polygenic scores) for minimizing the risk of genetic diseases · Engagement with all important, new publications on the science of genetic enhancement. (shrink)

Comprising eight revised essays and seven new pieces, this work provides a comprehensive resource for students, scientists, bioethicists, physicians, and laypeople to better understand and discuss the ethical issues underlying this technology that has the potential to forever change the world.

Bioethics: 50 Puzzles, Problems, and Thought Experiments collects 50 cases—both real and imaginary—that have been, or should be, of special interest and importance to philosophical bioethics. Cases are collected together under topical headings in a natural order for an introductory course in bioethics. Each case is described in a few pages, which includes bioethical context, a concise narrative of the case itself, and a discussion of its importance, both for broader philosophical issues and for practical problems in clinical ethics and (...) health policy. Each entry also contains a brief, annotated, list of suggested readings. In addition to the classic cases in bioethics, the book contains discussion of cases that involve several emerging bioethical issues: especially, issues around disability, social justice, and the practice of medicine in a diverse and globalized world. (shrink)

The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application of the General Data Protection Regulation (GDPR). (...) The introduction of the draft regulation for a European Health Data Space (EHDS) in May 2022 seeks to address some of these legal issues. If passed, it will create an obligation to share electronic health data for certain secondary purposes. While there is a clear need to address the legal complexities involved with data sharing, it is critical that any proposed reforms are in line with ethical principles and the expectations of the data subjects. In this paper we offer a critique of the EHDS and offer some recommendations for this evolving regulatory space. (shrink)

GMOS and Political Stance: Global GMO Regulation, Certification, Labeling, and Consumer Preferences provides a foundational-to-current challenges resource for those involved in developing and applying regulations to these important resources. Beginning with basics of GMOs, the book first familiarizes the reader with the history, economic status, associated risks, global politics, and socio-economics of GMOs. From exploring the necessity of GMO regulations with the existing GMO technology as well as new gene editing technologies to discussion by GMO regulations experts from different continents (...) and countries, readers will find the information necessary to understand the laws, rules, regulations and policies at domestic and international scale. A last chapter delivers an update and future look on gene-edited food and feed and discusses the possibilities on the future risk assessment, legislation and regulation of gene-edited products. GMOS and Political Stance provides a unique and applicable synchronization of all regulatory information on GMOs to facilitate effective and efficient regulatory development and adherence." -- Amazon. (shrink)

This chapter examines whether high prices for gene therapies are justified and whether the problems associated with high prices can be solved by the "pay for performance" (P4P) reimbursement model. To this end, we first describe how prices for new drugs, including gene therapies, are set in Germany (section 2.). P4P is then presented as an example of a reimbursement model (section 3.). The subsequent ethical analysis (section 4.) first examines whether P4P models can sustainably guarantee the right to health (...) and healthcare for all people (section 4.1; cf. on the "sustainable right to health" already Alex, 2021). It is then shown that cost-benefit analyses for setting prices for new gene therapies must be viewed critically from an ethical perspective and pose a problem for equity of access and thus also for the sustainable guarantee of a right to health (section 4.2). The final question is whether P4P is compatible with the idea of human dignity (Article 1 I 1 of the German Basic Law) (section 4.3; cf. already König et al., 2020). -/- Alex, K. (2021): Ethical conceptualization of a sustainable right to health(care). In: Schildmann, J. et al. (eds.): Defining the value of medical interventions. Normative and empirical challenges. Kohlhammer, Stuttgart: 29-48. PMID: 36256802 König, J. et al. (2020): Am individuellen Therapieergebnis orientierte Erstattungsverfahren in der Onkologie: ethische Implikationen am Beispiel der CAR-T-Zelltherapie. In: Ethik Med 32: 85–92. doi: 10.1007/s00481-020-00565-3. (shrink)

Epigenetic research has brought several important technological achievements, including identifying epigenetic clocks and signatures, and developing epigenetic editing. The potential military applications of such technologies we discuss are stratifying soldiers’ health, exposure to trauma using epigenetic testing, information about biological clocks, confirming child soldiers’ minor status using epigenetic clocks, and inducing epigenetic modifications in soldiers. These uses could become a reality. This article presents a comprehensive literature review, and analysis by interdisciplinary experts of the scientific, legal, ethical, and societal issues (...) surrounding epigenetics and the military. Notwithstanding the potential benefit from these applications, our findings indicate that the current lack of scientific validation for epigenetic technologies suggests a careful scientific review and the establishment of a robust governance framework before consideration for use in the military. In this article, we highlight general concerns about the application of epigenetic technologies in the military context, especially discrimination and data privacy issues if soldiers are used as research subjects. We also highlight the potential of epigenetic clocks to support child soldiers’ rights and ethical questions about using epigenetic engineering for soldiers’ enhancement and conclude with considerations for an ethical framework for epigenetic applications in the military, defense, and security contexts. (shrink)

Distributive justice is one of the central questions of contemporary moral and political philosophy. Discussions on this topic are often presented as a confrontation between two groups of thinkers: libertarians and luck egalitarians. The former emphasize the dependence of the existing distribution on the individual choice and personal responsibility of people, and therefore are skeptical about various redistribution programs. The latter, on the contrary, emphasize the influence of morally arbitrary luck on the economic situation of people, and therefore welcome redistributive (...) measures to compensate for this brute luck. Left-libertarian claims to reconcile these two types of moral considerations. The classical left-libertarian point of view seeks to offset the influence of brute luck through an egalitarian distribution of the benefits of owning natural resources that are independent of anyone’s choice and responsibility. However, this position does not sufficiently take into account the influence of other factors of brute luck and, in particular, genetic endowments on the distribution of economic wealth. This article discusses three approaches that allow left-libertarians to take into account the factor of genetic luck in interpersonal distribution. First, it is Hillel Steiner’s proposal to attribute genetic information to natural resources, the benefits of which are subject to egalitarian redistribution. Second, it is the concept of equal opportunity for welfare by Peter Vallentyne, Michael Otsuka and Eric Roark. Third, it is the universal dominance criterion of Philippe Van Parijs and Kasper Ossenblok. The first two approaches face a number of moral and practical difficulties, but the third approach is able to overcome them. Thus, the universal dominance criterion is the most promising way to reconcile left-libertarianism and justice in the distribution of genetic endowments. (shrink)