Community-level legal and policy innovations or “experiments” can be important levers to improve health. States and localities are empowered through the 10th Amendment of the United States Constitution to use their police powers to protect the health and welfare of the public. Many legal and policy tools are available, including: the power to tax and spend; regulation; mandated education or disclosure of information, modifying the environment — whether built or natural ; and indirect regulation. These legal and (...) policy interventions can be targeted to specific needs at the community level and are often relatively low-cost, but high impact interventions. As every community is different, effective laws and policies will vary. This freedom allows states and localities to, as Justice Louis Brandeis argued, truly serve as “laboratories of democracy.”. (shrink)

A large body of information and opinion related to COVID-19 is being shared via social media platforms. Recent reports have raised concerns about the reliability and verifiability of said information being disseminated and the way systems, processes and design of the platforms facilitates such spread. This, alongside other areas of concern, has resulted in several social media platforms taking steps towards tackling the spread of mis- and dis-information. Here we discuss approaches to online public health messaging (...) from a range of sources during COVID-19, with a focus on official and non-official sources in the United Kingdom. We highlight issues for ongoing public health decisions, and the potential impact for the future course of the pandemic. (shrink)

This paper examines the debate over the relationship between the public sphere and communication, which has become a focus of attention after the publication of Jürgen Habermas's Structural Transformation of Public Sphere in English in 1989, following the two volumes of his The Theory of Communicative Action in 1984 and 1987. Although the historical account of the public sphere has also received a good deal of attention, I deal mainly with the normative dimension of Habermas's theory as (...) it led to a rethinking and reassessment of public broadcasting, to the end of restructuring it as a site where 'citizens act as a public'. That is to say, a site where people assemble and unite freely, and express and publicize their opinions on matters of general interest without constraint in an age of deregulated communications. Several scholars have provided us with maps for re-organizing the media of communications in this respect, but they have failed to analyze the 'information' which feeds the 'informed citizen'. This paper addresses not only what information means today—whether it is a digit, a signal, or content—but also how it is produced within daily routine practices and how the nature of the means of its dissemination influences its character. Another serious aspect of those assessments, including that of Habermas, is the global character of communications today. Habermas is well aware of the mismatch between the global market and the absence of its corollary in politics. Yet his silence in the economics of information, even as he acknowledges the digitalization of communications and 'a world public sphere', also calls for a critical account of the relations between 'information', democratic politics and the question of scale. (shrink)

Timely and accurate information is vital to the success of row crop farmers in the United States. Information access is also critical to conservation efforts due to its influence on best management practice adoption. Public information sources like extension educators have been declining in importance for farmers, raising concerns around what information farmers receive on conservation practices and the accessibility of agronomic information. In this study we investigate farmers’ changing information source consultation by (...) broadly considering the agricultural information landscape, exploring whether farmers have displayed clear trends in access between public and private sources and whether certain farmer or operational characteristics predict public or private source access. We utilize data from a 2018 survey of farmers in four Corn Belt states to examine farmers’ information seeking behaviors and predict the number of total, public, and private sources accessed using structural equation modeling with latent variables. Our findings elaborate on the public-to-private source shift and reveal that farmers continue to seek information from both private and public sources, though the frequency, mode of contact, and types of farmers contacting these sources differ. Results suggest public information sources are still influential, but they are accessed less frequently, tend to appeal to farmers with stronger environmental concerns, and have less appeal to older farmers compared to private information sources. Our findings indicate the potential for extension and other public sources to diversify modes of communication to further their reach. (shrink)

This paper evaluates the content of the syllabi of postgraduate courses on public health ethics within accredited schools and programs of public health in the United States in order to gain an awareness of the topics addressed within these courses. Methods: Data was gathered via the analysis of syllabi of courses on PHE. In 2012, information was requested by e-mail from the 48 schools and 86 PH programs accredited by the U.S. Council on Education for Public (...) Health for 2012. The “Epidemiology and PHE Syllabi” project of the University of Miami also was consulted. A table of topics was drawn up in order to carry out content analysis of the documents. Results: Data was obtained from 25 schools and 36 accredited programs ; 36 syllabi were gathered and 75 different topics were found. Of these, 38 topics were addressed in six or more syllabi and can be grouped as follows: foundations of PHE; autonomy and its limits; infectious disease control; justice; research ethics; health education and promotion; environmental and occupational health; screening; genetics; privacy and confidentiality; and community-based practice and vulnerable populations. Conclusions: The analyzed syllabi show high variability in curricular content. The debate with regard to whether a core curriculum on PHE should be established is ongoing. The results of this work might be of interest for schools and programs of PH in other countries or regions of the world in order to develop or ameliorate their own PHE syllabi. (shrink)

For five Dutch public information campaigns, this study assessed whether interpersonal communication mediated the effects of exposure (to TV, radio, or online banners) on five persuasive outcomes: awareness, knowledge, attitude, intention, and self-reported behavior. Structural equation modeling was used to test 23 models relating exposure to one of these outcome variables. Few direct effects of media exposure were found (for online banners, TV, and radio in, respectively, one, four, and seven of the 23 models). In contrast, results revealed (...) that interpersonal communication had direct effects on the outcomes in 17 of the 23 models. Moreover, indirect effects of media exposure via interpersonal communication were found for online banner, TV, and radio exposure in, respectively, eight, nine, and ten models. These results indicate that interpersonal communication plays an important role in explaining media exposure persuasive effects and should be taken into account in the development and evaluation of public information campaigns. (shrink)

Background This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.Methods We adapted democratic deliberation, an approach to stakeholder engagement, for (...) use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.Results A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.Conclusion The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described. (shrink)

In this article, the authors study the problem of balance of trust and mistrust associated with the turbulence of modern society, redundancy, and heterogeneity of information and communication flows creating a contradictory picture of the world. Social networks are considered as one of the basic modern information resources creating previously unavailable opportunities for communication, interaction, information sharing, and commonality construction. Social networks users broadcast the experience of constructing communications in real daily life in the Internet community (...) forming circles of ‘friends‘, building a chain of weak social ties; but the problem of trusting ‘friends‘ remains not solved in global space. A survey of users of social networks, conducted as part of this study, demonstrates conflicting findings. The opinions of ‘friends‘ does not always have an impact on the degree of trusting events, information, groups, likes, and dislikes to other users. Users often trust strangers and less familiar people. The social networks demonstrates the demand for uniting ‘brige-building‘ trust. However, the trust remains extremely narrow throughout, leading to fragmentation and alienation of individuals from each other in an attempt to find their safe niche. Distrust of narrow and wide radius leads to far-reaching consequences and greater uncertainty in society, not creating the preconditions for openness and the vision of the future. (shrink)

Purpose In 2006, the United Nations established the convention on the rights of persons with disabilities. Simultaneously, the UN has adopted the sustainable development goals in 2015 and the 17 goals must be achieved by member states by 2030. Regionally, countries within the Caribbean community have formulated the Kingston Accord and the Declaration of Petion Ville. Both of these two instruments outlined a regional framework on the issue of persons with disabilities. The media, therefore, have axiological roles to (...) play in educating and informing all the stakeholders of these programmes, policies and legislation. It is within this context that this researcher did a qualitative assessment of how the media within Caribbean societies have been aiding the process of developmental transformation for PWDs. The main purpose of this paper therefore; is to show that if the varied programmes and policies relating to PWDs within the Anglophone Caribbean are to be successfully implemented, digital and traditional media will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. The main purpose of this paper therefore; is to show that if the varied programmes and policies relating to PWDs within the Anglophone Caribbean are to be successfully implemented, digital and traditional media will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. Design/methodology/approach The central argument guiding this paper is that if the varied programmes and policies relating to PWDs within the Caribbean are to be successfully implemented, the media, in all its forms, will have to play a lead role through their social and ethical responsibilities in changing attitudes of non-disabled individuals towards the members of this vulnerable group. The unequivocal questions that have been answered are how and what are the media doing to aid in the transformation of the lives of PWDs in the Caribbean? Are they fulfiling their social and ethical responsibilities? Findings The major finding is that the media in the Anglophone Caribbean has significant work to do to fulfil one of its social and ethical responsibilities in aiding the developmental transformation of PWDs in the region. Research limitations/implications The research is limited by the fact that there is serious data scarcity on the population of PWDs in the region. Serious research on the population is just emerging and this will change significantly over the next few years. Practical implications The practical implication of this study is that it will bring to the forefront of the media in the Caribbean, the importance of placing issues relating to PWDs on the development agenda in a consistent manner. Social implications PWDs will be brought in the mainstream of Caribbean society over time. Originality/value This is an original study and will undoubtedly contribute to a greater understanding of the media and PWDs in the Caribbean. (shrink)

Professor Kenneth J. Arrow is one of the most distinguished economic theorists. He has played a major role in shaping the subject and is honoured by the publication of three volumes of essays on economic theory. Each volume deals with a different area of economic theory. The books include contributions by some of the best economic theorists from the United Stated, Japan, Israel and Europe. This third volume is entitled Uncertainty, Information, and Communication.

The relationship between knowledge, belief, and ethics is an inaugural theme in philosophy; more recently, under the title “ethics of belief” philosophers have worked to develop the appropriate methodology for studying the nexus of epistemology, ethics, and psychology. The title “ethics of belief” comes from a 19th-century paper written by British philosopher and mathematician W.K. Clifford. Clifford argues that we are morally responsible for our beliefs because each belief that we form creates the cognitive circumstances for related beliefs to follow, (...) and we inevitably influence each other through those beliefs. This study argues that recent cognitive research supports Cliffordian insights regarding patterns of belief formation and social influence. From the confirmation offered by such research, it follows that informational accuracy holds serious ethical significance in public discourse. Although scientific and epistemological matters are not always thought to be linked to normative morality, this study builds on Clifford's initial insights to show their linkage is fundamental to inquiry itself. In turn, Clifford's ethical and epistemic outline can inform a framework grounded in “public reason” under which seemingly opposed science communication strategies are philosophically united. With public discourse on climate change as the key example, empirically informed and grounded strategies for science communication in the public sphere are considered. (shrink)

Public information is a social resource that connects all aspects of social life, regulates social activities and public behaviors, and plays a very important role in influencing public trust. Based on the perspective of communication, we divide the government into two ways to release public information, that is, mass communication and personalized recommendation. Moreover, the public can choose to acquire or not acquire a strategy. Then, this study conducts an evolutionary game between the (...) government and the public to analyze the influence of public information on the public in China. Our objective is to find how the evolutionary path changes between the two players when strategies are changing. Then, a simulation analysis is presented in six scenarios to illustrate the results. The results show that the two players can converge to different stable statuses under different situations. (shrink)

New techniques for the genetic modification of organisms are creating new strategies for addressing persistent public health challenges. For example, the company Oxitec has conducted field trials internationally—and has attempted to conduct field trials in the United States—of a genetically modified mosquito that can be used to control dengue, Zika, and some other mosquito-borne diseases. In 2016, a report commissioned by the National Academies of Sciences, Engineering, and Medicine discussed the potential benefits and risks of another strategy, using gene (...) drives. Driving a desired genotype through a population of wild animals or insects could lead to irreversible genetic modification of an entire species. The NASEM report recommends community, stakeholder, and public engagement about potential uses of the technology, and it argues that the engagement should occur as research advances, well before gene drives are deployed. Yet what “engagement” means in practice is unclear. This article seeks clarity on this problem by offering a justification for community engagement and drawing out implications of this argument for the implementation and desired outcomes of community engagement. Community engagement is essential when it comes to research that would release genetically modified insects or animals into the environment. By contrast, obtaining informed consent from people who live near such a proposed field trial is neither necessary nor sufficient. Drawing on the epistemic and moral arguments for deliberative democracy, I propose two discrete mechanisms of community engagement: community advisory boards and deliberative forums, neither of which has been systematically incorporated into research governance. The proposed mechanisms would engender respect for persons who live near field trials, even when the results of deliberation override some individuals’ preferences. Community engagement foregrounds the community in our thinking about humans’ relationship to nature, and it implies that deciding to release genetically modified insects or animals into the wild ought to be a collective decision, not one made by product developers, policy-makers, private companies, research funders, or scientists alone. (shrink)

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers (...) in 'doing ethics' on the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

Background Community advisory boards have expanded beyond high-income countries and play an increasing role in low- and middle-income country research. Much research has examined CABs in HICs, but less is known about CABs in LMICs. The purposes of this scoping review are to examine the creation and implementation of CABs in LMICs, including identifying frequently reported challenges, and to discuss implications for research ethics. Methods We searched five databases for publications describing or evaluating CABs in LMICs. Two researchers independently (...) reviewed articles for inclusion. Data related to the following aspects of CABs were extracted from included publications: time, country, financial support, research focus, responsibilities, and challenges. Thematic analyses were used to summarize textual data describing challenges. Results Our search yielded 2005 citations, 83 of which were deemed eligible for inclusion. Most studies were published between 2010 and 2017. Upper-middle-income countries were more likely to have studies describing CABs, with South Africa, China, and Thailand having the greatest numbers. The United States National Institutes of Health was the main source of financial support for CABs. Many CABs focused on HIV research. Thirty-four studies reported how CABs influenced the informed consent process for clinical trials or other aspects of research ethics. CAB responsibilities were related to clinical trials, including reviewing study protocols, educating local communities about research activities, and promoting the ethical conduct of research. Challenges faced by CABs included the following: incomplete ethical regulations and guidance; limited knowledge of science among members of communities and CABs; unstable and unbalanced power relationships between researchers and local communities; poor CAB management, including lack of formal participation structures and absence of CAB leadership; competing demands for time that limited participation in CAB activities; and language barriers between research staff and community members. Several challenges reflected shortcomings within the research team. Conclusions Our findings examine the formation and implementation of CABs in LMICs and identify several ethical challenges. These findings suggest the need for further ethics training among CAB members and researchers in LMICs. (shrink)

Objectives: Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought.Methods: 49 members of the public and four non-medical members of local community health councils in (...) South Wales, UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent.Results: Among focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting.Conclusions: This exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues. (shrink)

Saisir est une association d’éducation populaire et d’éducation aux médias qui organise des « ateliers populaires de décryptage de l’actualité ». Le principe en est simple : une organisation – association, entreprise, café, collectivité locale – propose à son public de se réunir environ deux heures pour débriefer ensemble de l’actualité du moment. Derrière ce format se cache le triple pari de l’ oralité, de l’ altérité et de l’ unité de temps et d’espace. Au lieu d’écouter ou de (...) voir les informations en état de solitude passive, Saisir invite à formuler avec autrui ce qui peut être une signification commune de ces informations. (shrink)

Uncertainty is inherent in new and unexpected viral outbreaks such as the current COVID-19 pandemic. It imposes challenges for health officials in soliciting cooperative behavioural changes based on incomplete information. In this paper, we use evolving mask recommendations in the United States as an example to analyse the ethical importance and practical demonstration of trustworthiness in pandemic messaging and decision-making. We argue that responsible public health interventions in the time of uncertainties requires explicit intersecting ethical considerations both in (...) action and in communication to promote trustworthiness. First, as public health decisions have to be made in the face of incomplete and evolving data, health officials need to exhibit competence while committing to epistemic humility. They can explain the methods used in making and updating mask recommendations as well as explicitly acknowledge the need to incorporate sociocultural and other contextual considerations in translating scientific data into mask recommendations. Second, officials and agencies must uphold and communicate decisional transparency as part of their effort to demonstrate accountability and promote the public’s understanding of the evolving pandemic. Third, especially since both the pandemic and mask recommendations may have disparate impact on different populations, officials should start with the fair implementation of the least restrictive measures that can help reduce harm. (shrink)

This Special Issue collects five articles that are located in the present global context, and draw on methods from across critical discourse studies (CDS) to examine the interaction between material realities of climate change and discursive communication between different Parties and non-Party stakeholders in multimodal ways and on multiple platforms. To this end, it draws on discourses such as the UN speeches, UN documents, EU green deal policy, official documents submitted by African countries to the United Nations Framework Convention on (...) Climate Change (UNFCCC), and news reports in China and Australia. In these studies, diverse social and linguistic concepts were utilized and revisited to better inform the use of linguistic and/or visual symbols in different types of public discourse. This Special Issue aims to take the field a step further by showing the importance of carrying out more international research to expand our knowledge of the global, regional, and local discourse and ideologies that shape what we come to know and understand as climate change and how it is to be addressed. We envisage it will bring significant theoretical, methodological, and empirical insights into the relations between language use, discursive practice, and social practice. (shrink)

Based on an empirical study of the British think tank Demos, the article deliberates on the nature of current political ideas. The key argument is that such a deliberation must take into account not only ideas of production but also ideas of mediation. The article argues that the ability to disseminate, brand, and market political ideas in the public sphere through the mass media is a crucial part of the activities of modern idea producers such as think tanks. Ideas (...) are normally conceptualized as statements. As an analytical tool, the article makes a distinction between the two components of a statement. The two components are utterance (or impartation) and proposition (or semantic unit more generally). By so doing, it is possible to focus on (1) the necessity for think tanks to be an `impartational node' in communicative networks and (2) the importance of attributing certain meanings and values to the political ideas (to brand ideas). From this theoretical outset, the article then describes the logic or nature of the mediation, marketing and branding of political ideas. (shrink)

Aim: To elicit preferences for prognostic information, attitudes towards withdrawal of life-sustaining treatment (WLST) and perspectives on acceptable quality of life after post-anoxic coma within the adult general population of Germany, Italy, the Netherlands and the United States of America. Methods: A web-based survey, consisting of questions on respondent characteristics, perspectives on quality of life, communication of prognostic information, and withdrawal of life-sustaining treatment, was taken by adult respondents recruited from four countries. Statistical analysis included descriptive analysis and (...) chi2-tests for dierences between countries. Results: In total, 2012 respondents completed the survey. In each country, at least 84% indicated they would prefer to receive early prognostic information. If a poor outcome was predicted with some uncertainty, 37-54% of the respondents indicated that WLST was not to be allowed. A conscious state with severe physical and cognitive impairments was perceived as acceptable quality of life by 17–44% of the respondents. Clear differences between countries exist, including respondents from the U.S. being more likely to allow WLST than respondents from Germany (OR = 1.99, p < 0.001) or the Netherlands (OR = 1.74, p < 0.001) and preferring to stay alive in a conscious state with severe physical and cognitive impairments more than respondents from Italy (OR = 3.76, p < 0.001), Germany (OR = 2.21, p < 0.001), or the Netherlands (OR = 2.39, p < 0.001). Conclusions: Over one-third of the respondents considered WLST unacceptable when there is any remaining prognostic uncertainty. Respondents had a more positive perspective on acceptable quality of life after coma than what is currently considered acceptable in medical literature. This indicates a need for a closer look at the practice of WLST based on prognostic information, to ensure responsible use of novel prognostic tests. (shrink)

This book offers geographical perspectives on the condition of the United States at the outset of the twenty-first century. It compares the American ideals of liberty, equality, individual opportunity, and social improvement with the contemporary condition of the regions, states and localities - the ideal American space with its reality as a place. It uses the public standard provided by the official ideology of the United States to see how well things are really going. The authors consider the contrast (...) between ideal and reality at local, state, and national levels in education, health, and welfare, in community, race, gender, and class relations, in economic and industrial development, and in the use and exploitation of America's landscape. Each chapter addresses the issues through evidence of long-term and recent trends, and grounds its arguments in information. American Space/American Place provides a series of compelling insights into the current condition of American society, its natural environment, and its place within the world. (shrink)

In this issue of the Hastings Center Report, Maya Sabatello and Paul Appelbaum explore the assumptions about community embedded in the U.S. Precision Medicine Initiative, which aims to recruit donor-partners who reflect the United States’ racial and ethnic diversity. As Sabatello and Appelbaum discuss, the initiative is like other national biobanking efforts in bringing to life an imagined genetic community in need of critical attention, and given the public-private forms of partnership at the heart of the PMI, (...) such efforts could become avenues to deepen existing inequalities rather than to alleviate them. The notion of justice has underwritten debates about genomic medicine, informed consent, citizenship, benefit sharing, and profit making since the first national biobanking project emerged at the dawn of the twenty-first century. In a paradigmatic case, the creation, by an Icelandic company, of the deCODE genomic biobank opened up fierce debates about the proper relationship between public good and private gain and became the first global example of the economic and political implications that imagined genetic communities could have in our shared future. In Mexico, in 2001, the Icelandic case fueled a policy agenda to deal with global health justice and the prospects of a future market-based colonialism predicated on the intimate knowledge of DNA. (shrink)

In this issue of the Hastings Center Report, Maya Sabatello and Paul Appelbaum explore the assumptions about community embedded in the U.S. Precision Medicine Initiative, which aims to recruit donor‐partners who reflect the United States’ racial and ethnic diversity. As Sabatello and Appelbaum discuss, the initiative is like other national biobanking efforts in bringing to life an imagined genetic community in need of critical attention, and given the public‐private forms of partnership at the heart of the PMI, (...) such efforts could become avenues to deepen existing inequalities rather than to alleviate them. The notion of justice has underwritten debates about genomic medicine, informed consent, citizenship, benefit sharing, and profit making since the first national biobanking project emerged at the dawn of the twenty‐first century. In a paradigmatic case, the creation, by an Icelandic company, of the deCODE genomic biobank opened up fierce debates about the proper relationship between public good and private gain and became the first global example of the economic and political implications that imagined genetic communities could have in our shared future. In Mexico, in 2001, the Icelandic case fueled a policy agenda to deal with global health justice and the prospects of a future market‐based colonialism predicated on the intimate knowledge of DNA. (shrink)

Good communication between healthcare providers and patients is vital to effective healthcare. In order to understand patients’ complaints, make accurate diagnoses, obtain informed consent and explain treatment regimens, clinicians must communicate well with their patients. This can be challenging when treating patients from unfamiliar cultural backgrounds, such as the Deaf. Not only are they a linguistic and cultural minority, they are also members of the world’s largest and oft-forgotten minority group: the disability community. Under Article 25 of the United (...) Nations Convention on the Rights of Persons with Disabilities, persons with disabilities have rights to the same range, quality and standard of free or affordable healthcare and programmes as provided to other people. Yet communication barriers and healthcare providers’ lack of familiarity with Deaf culture can impair the quality and accessibility of healthcare for the Deaf. This essay analyses the scope of this issue in Singapore: a state party to the CRPD which has a vibrant Deaf community, and yet no legislative or constitutional guarantees of the rights of persons with disabilities. In addition to exploring the communication barriers faced by Deaf patients in Singapore, this essay highlights ways in which healthcare providers and the state can support community-based initiatives to overcome these barriers. (shrink)

Digital communications technology isreconfiguring democratic governance. Federalagencies increasingly rely on Internet-basedapplications to improve citizen-governmentinteraction. Early efforts in the area ofdigital government have created newparticipatory opportunities as well asformidable governance challenges. Federalagencies are working within and across theirboundaries to find an e-rulemaking format thatis cost-effective, legally appropriate,user-friendly, and well suited to diverse modesof rulemaking activities. One of the overridingissues emerging from this process is thedefinition of meaningful public participationin rulemaking. An examination of an early caseinvolving the USDA's National Organic Programproposed (...) rule summarizes comments related togenetic engineering, biosolids, irradiation,and the role of the National Organic StandardsBoard. The USDA's experience suggests a numberof complex challenges that must be met toeffectively integrate Web-based communicationsinto the federal rulemaking process. (shrink)

Opinion leaders within the community may lead debate on animal welfare issues and provide a path for information to their social networks. However, little is known about OLs’ attitudes, activities conducted to express their views about animal welfare and whether they are well informed, or not, about husbandry practices in the red meat industry. This study aimed to identify OLs in the general public and among producers and compare OLs and non-OLs’ attitudes, knowledge and actions to express (...) their views about the red meat industry. Two questionnaires, one for the Australian general public and one for Australian red meat producers, were developed to identify general attitudes. From these questionnaires, OLs were identified using a two-step cluster analysis. Subsequently, a sub-sample of 19 OLs participated in a follow-up phone interview. Results disclosed some clear OLs’ characteristics. Public OLs held more negative perceptions of the red meat industry and perceived they had more knowledge about husbandry procedures. However, their actual knowledge about animal husbandry was not different from non-OLs. Public OLs also used and trusted social and internet media more than did non-OLs. In the producer group, a large percentage of OLs were identified. Producer OLs had more actual knowledge about animal husbandry and engaged in more behaviours to express dissatisfaction with the industry than non-OLs. Unlike the public respondents, this group used conventional media more than social and internet media, and their levels of trust in all kinds of media were low. While there were clear differences, both groups believed that is important to increase communication and educate about farm practices. This may present an opportunity to develop an opinion leader intervention strategy where informed OLs could later disseminate accurate information to their social networks. Further studies should test if sustained and facilitated educational sessions between public and producer OLs can assist in increasing communication, knowledge and perhaps, may assist in achieving convergence of concerns and expectations between both groups. (shrink)

BackgroundWhen conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations.MethodsA systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review.ResultsOf 1447 articles found 1391 were (...) excluded ; 56 were relevant and included. Articles were categorised into original research that evaluated the consent process or publications detailing the process of seeking consent and guidelines for ethical research. Guidelines were categorised into international ; national and state/regional/local guidelines. In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and “plain language” forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the ‘Grey literature’ concerns about the consent process are identified but no solutions are offered.ConclusionConsultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process. (shrink)

The 2015 judgment of the Namibia Supreme Court in Government of the Republic of Namibia v LM and Others set an important precedent on informed consent in a case involving the coercive sterilisation of HIV-positive women. This article analyses the reasoning and factual narratives of the judgment by applying Neil Manson and Onora O’Neill’s approach to informed consent as a communicative process. This is done in an effort to understand the practical import of the judgment in the particular context of (...) resource constrained public healthcare facilities through which many women in southern Africa access reproductive healthcare. While the judgment affirms certain established tenets in informed consent to surgical procedures, aspects of the reasoning in context demand more particularised applications of what it means for a patient to have capacity and to be informed, and to appropriately accommodate the disruptive role of power dynamics in the communicative process. (shrink)

Large-scale genetic databases are being developed in several countries around the world. However, these databases depend on public participation and acquiescence. In the past, information campaigns have been waged and little attention has been paid to dialogue. Nowadays, it is important to include the public in the development of scientific research and to encourage a free, open and useful dialogue among those involved. This paper is a review of community consultation strategies as part of four proposed (...) large-scale genetic databases in Iceland, Estonia, United Kingdom and Quebec. The Iceland Health Sector Database and Estonian Genome Project have followed a “communication approach” in order to address public concerns, whereas, UK Biobank and Quebec CARTaGENE have chosen a “partnership approach” to involve the public in decision-making processes. (shrink)

BackgroundHIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify ethical standards and safeguards to ensure cell and gene therapy (CGT) HIV cure research remains valued and acceptable to as many stakeholders as possible as it advances on a global scale.MethodsTo elicit preliminary ethical and practical considerations to guide CGT HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in the United States: (1) biomedical (...) HIV cure researchers, (2) bioethicists, and (3) community stakeholders. Interviews permitted evaluation of informants’ perspectives on how CGT HIV cure research should ethically occur, and were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to CGT towards an HIV cure.ResultsWe interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of CGT towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, CGT strategies considered unacceptable, additional ethical considerations, and considerations for first-in-human CGT HIV cure trials. Informants also proposed important safeguards to developing CGT approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of CGT interventions, and mitigating risks of immune overreactions.ConclusionOur study identified preliminary considerations for CGT-based HIV cure across three key stakeholder groups. Respondents identified an ideal cure strategy as one which would durably control HIV infection, protect the individual from re-acquisition, and eliminate transmission to others. Known and unknown risks should be anticipated and perceived as learning opportunities to preserve and honor the altruism of participants. Preclinical studies should support these considerations and be transparently reviewed by regulatory experts and peers prior to first-in-human studies. To protect the public trust in CGT HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve. Additional ethics studies are required to expand stakeholder participation to include traditionally marginalized groups and clinical care providers. (shrink)

Processes of adapting complex information for broad audiences became a pressing concern by the turn of the twentieth century. Channels of communication ranged from public lectures to printed books designed to serve a social class eager for self-improvement. Through analyzing a course of public lectures given by George Howard Darwin (1845–1912) for the Lowell Institute in Boston and the monograph he based on these, The Tides and Kindred Phenomena of the Solar System (1898), this article connects the (...) important practices of public lecturing and book production–two aspects of knowledge dissemination that tend to be studied as separate entities. Darwin, Plumian Professor of Astronomy at the University of Cambridge and son of the famous naturalist, relied on a diverse material culture when lecturing and producing a book. Giving a new account of Darwin’s scientific work through exploring his adaption of it for broader audiences, this article connects the diverse material culture Darwin employed in talks to the practice of producing a published book. The content of objects demonstrated and the lantern slides projected during Darwin’s lectures evolved to form a book designed to engage broad sectors of society in Europe and the United States. Darwin’s lectures were attended at full capacity, while The Tides was soon printed in numerous English editions and translated into German, Italian, Hungarian, and Spanish. (shrink)

This paper presents two projects concerned with the application of natural language processing technology for improving communication between Public Administration and citizens. The first project, GIST,is concerned with automatic multilingual generation of instructional texts for form-filling. The second project, TAMIC, aims at providing an interface for interactive access to information, centered on natural language processing and supposed to be used by the clerk but with the active participation of the citizen.

Purpose This paper aims to discuss characteristics of Korea’s system responses with a research framework of the structure, conduct and performance theory and explain the role of information, communication technologies (ICT) and Big Data from a technology-mediated control (TMC) perspective. Design/methodology/approach This study examines the contextual nature of Korea’s diagnostic, preventive and treatment efforts. Particular attention is paid to issues related to the effective use of Big Data analytics and its applications, reporting mechanisms and public safety measures. The (...) research model defines key factors in assessing the effectiveness of Korea’s responses. Findings Findings of this research suggest: effective strategic planning and operational execution use well-tested and designed crisis-responsive manuals; linkage role of ICT/Big Data is prominent in trace, test and treat and participation (3T + P); and aggressive epidemic investigations require synergistic efforts of national and local government units, broad societal support and participation and contribution of global firms offering their domestic and global supply chain network capabilities. Research limitations/implications The Korean Government's effective response experiences suggest the synergy of political, social, cultural and technological factors. Future studies may explore how personal privacy and public safety are both achieved in different social–cultural–political contexts (Ahn et al., 2020; Delgado et al., 2020; Sharma and Bashir, 2020). Other emerging organizational issues and international comparative studies are worth further investigation in future studies. Practical implications This case study suggests how to apply ICT capabilities for organizing a national response to the coronavirus pandemic (COVID-19) pandemic. Public and private partnership in the framework of sociotechnological synergy (i.e. integration of ICT and social orchestration) is essential for the 3T process. In support of public policy initiatives, global firms share their IT infrastructure and supply chain integration experiences to accommodate global-level crises like the COVID-19 pandemic. Social implications This study extends the TMC framework to a national level. In the adapted TMC framework, the control source, control target and linkage mechanism are specified. Using TMC, this shows the dynamic roles of ICT/Big Data in Korea’s COVID-19 response experiences. Originality/value The impacts of the COVID-19 are rapid and enormous. Despite the controversial early policy decisions and the rapid rise of confirmed patients, the world has recognized Korea’s effective responses to the COVID-19 pandemic. (shrink)

The rapid development of Internet technology has facilitated the dissemination of information that can threaten national security and public health, and effectively controlling the process of public opinion communication is an important topic in contemporary social network research. This paper establishes an official information-controlled public opinion propagation model based on the delay, latency, and conversion of public opinion communication under the control of official information. According to the influence and importance of the network (...) nodes, we theoretically derive the attitude conversion probability of the nodes, making the model more in line with the actual situation. Through actual cases, we analyzed the important influence of official information on the public opinion communication process and provided a theoretical basis for the government and relevant departments to supervise and correctly guide the public opinion network, which has certain practical significance. (shrink)

In this paper, we summarize the various impacts of incarceration with the aim of providing an overview of the ways mass incarceration affects society. In doing so, we look inside the black box of the largest penal experiment in world history: the quintupling of the prison population in the United States between 1973 and 2006. The question is, "What have been the social consequences of our incarceration policy?"One objective is to provide insight into what might be called the prison policy (...) paradox, namely, that a 500% generation_long growth in imprisonment has had little impact on crime. Answers are provided by looking inside the black box of penal policy and by identifying the various ways incarceration leads to social outcomes that are associated with public safety. The paper considers the problem of "public safety," because safety is a broader concept than crime. Though a desire for public safety includes a desire for low rates of crime, public safety connotes a more profound interest we have to live in a society where we feel secure pursuing our personal goals and fulfilling our life desires Using public safety as our criteria enables us to consider the ways incarceration affects our quality_of_life, especially through the way incarceration affects the informal social relations that promote the kind of profound social control that is a foundation for a sense of feeling safe.Three types of effects are described. Positive effects are those that improve public safety, negative effects reduce public safety, and "ambivalent" effects have the capacity to be both positive and negative. Five levels of social impacts on public safety are assessed:o Effects on individuals that change the way people act;o Effects on intimate relationships such as those with families and other loved ones;o Effects on social relationships that are felt as community_level outcomes;o Effects on institutions such as labor markets and the political economy;o Effects on democracy or social justice.Thus, the purpose of this paper is to summarize what is known, empirically and experientially, about the positive and negative ways incarceration affects levels of social expression. (shrink)

The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and (...) class='Hi'>information governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research. (shrink)

In this paper, I address a question in social epistemology about the unity of a scientic community to- wards its inner groups (teams, labs...). I investigate the reasons why these groups might want to \go it alone", working among themselves and hiding their discoveries from other groups. I concentrate on the intermediate results of a longer project, where the first steps can help to achieve a more advanced result. I study to what extent the isolation of research groups might (...) be damaging to the epistemic progress of the whole community. In order to get an idea of the reason why scientists might not share their intermediate results with others, consider for example Schawlow and Townes in the summer of 1958 (the historical material is drawn from Broberg, 1991, chap. 3): together they had just designed the principle of functioning of what would be known as the laser, with the intention of constructing the rst laser, relying on their theoretical ideas. Should they have published their theoretical discovery, or rather taken advantage of their advance on possible oppo- nents and start the experimental work? They chose to publish their theoretical ideas in a scientic journal, and they also led a patent application. On the one hand, it was a valuable choice: the patent was granted and their paper was published, making them soon famous. Further- more, another scientist called Gould was to le a simi- lar patent application a few months later, in March 1959; it was refused, because of the priority of Schawlow and Townes. If the latter had not submitted their idea in 1958, the patent would certainly have been acknowl- edged to Gould. In this sense, publishing their intermediate result was a worthy strategy. On the other hand, history showed that their publication had also some drawbacks for them. Schawlow and Townes' publication triggered a race among many American laboratories for the rst experimental construction of the laser. In addition to bringing them competitors, their publication helped these competitors in crucial ways; so much so that it was another scientist, Maiman, and not Schawlow and Townes, who was able to build the rst working laser, in May 1960, and to publish the result. If Schawlow and Townes had not published their theoretical idea, there are chances that they would have been the first ones to build a laser. Their publication of the first theoretical result certainly prevented them from getting the second experimental one. In short, the best publishing strategy about an intermediate result is no easy question for a scientist. Consider now the whole community, concerned with the results available to all and with the pace of the epistemic progress. Schawlow and Townes' publication enabled the rst laser to be built quicker, as other teams could rely on their theoretical work. More generally, being able to reuse other's works seems to be a rm basis of scientic progress. Thus, for the whole community, it seems that there are only benets if intermediate results are published. As this is not necessarily the best strategy for those who reach these intermediate results, there might be a conflict between the interests of individuals and those of the whole community. The question Schawlow and Townes faced was whether they should make their discovery publicly known, or keep it for themselves to progress alone. This alternative can also arise for an entire lab, when competing with other labs on some long-run project: should it make its discoveries known to its opponents, or only share them internally among its members? At a higher level still, this question arises for what can be called scientic schools, which are groups of labs sharing some particular approach|methodological, experimental or interpre- tational, for example. At each level within the scientic community, there are competitive groups of scientists which may decide to go it alone and to prevent their results from being accessible to others. If they had good reasons for doing so, there would be dramatic consequences for the whole community: other groups would not be able to reuse their results, labour force would be wasted in achieving them again, and the progress of the eld would be slowered. 9 The aim of this paper is to investigate this risk of division: to assess the conditions under which it may oc- cur, its damage for the community, and to draw the limit of an acceptable pluralism. The reasoning with benets and drawbacks which has been sketched for Schawlow and Townes seems to be implicitly an informal economic argument. In order to clarify and to rene such an argument, I will investigate it in a rational decision framework, supposing some utility or preferences for the groups of scientists, and I will propose a formal model, in game theory. In social epistemology of science, formal models have been proposed for various questions (for example, Kitcher 1990, 1993, Goldman 2009, Strevens 2003, 2006, Weisberg and Muldoon, forthcoming, Zollman 2007, 2008, 2009, 2010), but not for the question of the division of the scientic community. I will concentrate on the normative aspect of the question, ignoring the descriptive and historical question of whether groups do go it alone or not. The model I propose is sequential: two groups are competing on a research program, which consists of several results which have to be obtained in order. The groups always carry out some research for the next result, which they reach with some probability per unit of time. When a group, say A, reaches a result, it can either make it public for the other group, or continue its research. After a result is made public, the competitor B can start from it so as to continue its own research. Thus, when A publishes it loses its lead, and its competitor will be able to compete with it in the near future. But it is also recognized as the rst to reach this step. I consider two dierent cases, one in which the number of steps is limited, another where the limit concerns the number of temporal intervals. In both cases, assuming that all steps are equally dicult and equally rewarding, it turns out that the best strategy for a group concerned with its own reward is to make public every step it takes. Thus, there is no risk that groups might separate: a scientist, whatever its group, will publish for all. Finally, I turn to more complex situations, where results have varying size or diculty: there, groups can indeed be better o going it alone. (shrink)

Although legitimacy theory provides strong arguments that environmental, social and governance disclosure and performance can help mitigate firm-specific risks, this relationship has been repeatedly challenged by conceptual arguments, such as ‘transparency fallacy’ or ‘impression management’, and mixed empirical evidence. Therefore, we investigate this relationship in the revelatory case of initial public offerings, which represent the first sale of common stock to the wider public. IPOs are characterised by strong information asymmetry between firm insiders and society, while at (...) the same time suffering from uncertainty in firm legitimacy, culminating in amplified financial risks for both issuers and investors in aftermarket trading. Using data from the United States, we demonstrate that voluntary ESG disclosure reduces idiosyncratic volatility and downside tail risk and higher ESG ratings have lower associated firm-specific volatility and downside tail risk during the first year of trading in the aftermarket. We provide theoretical arguments for the relationships observed, suggesting that companies striving for ESG performance and communicating their efforts signal their compliance with sustainability-related norms, thus acquiring and upholding a societal license to operate. ESG performance and disclosure help companies build their reputation capital with investors after going public. We also report that ESG disclosure is a more consistent proxy for ex-ante uncertainty as an indicator of aftermarket risk, thereby replacing some of the more conventional measures, such as firm age, offered in the existing literature. (shrink)

Climatologists have a unique role in providing various stakeholders and public data users with weather and climate information. In the north central region of the United States, farmers, the agricultural sector, and policy makers are important audiences for climate science. As local and global climate conditions continue to shift and affect agricultural productivity, it is useful to understand how climatologists view their role as scientists, and how this influences their communication of climate science to agricultural stakeholders. In this (...) study, data from interviews and surveys of state and extension climatologists in the NCR are analyzed to identify perceived roles and responsibilities as scientists and communicators. Pielke’s framework of the idealized roles of scientists and their communication patterns are used to develop a typology of climate science communication. Findings reveal that more than half of climatologists perceive their role to provide information as pure scientists, while some engage in an arbiter role when requested. Fewer climatologists view their role as not only producing new knowledge, but also relating it to society and providing an expanded variety of alternative applications. Climatologists who perceive their role as simply providing information and letting data users interpret its application are missing an opportunity to reduce the gap between what scientists know and farmers believe. This suggests that if climatologists would frame their climate science message in terms of agricultural impacts, hazard mitigation and risk management alternatives they could help the agricultural sector adapt to and mitigate environmental risks from a changing climate. (shrink)

Researchers conducting large community-based studies among underserved populations may collect data on health conditions that are little-acknowledged in the local setting, and for which there are few if any services for referral of participants who need follow-up diagnosis and care. In the design and planning of studies for such settings, investigators and research ethics committees may struggle to determine what constitutes effective referral and whether it is reasonably available. We offer a guiding framework for referral planning, informed by our (...) experiences of research in the field and of service on research ethics committees, to support evaluation of local referral resources and consideration of the benefits, burdens and risks of referral in the local setting. The framework addresses both the impact of referral on the well-being of the people who would be referred and the impact that referral of study participants would have on local people outside the study. We use a sustained discussion of three field-based case examples to illustrate the ethical concerns at issue and to demonstrate the use of the referral planning framework. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:On Buddhist-Christian Studies in Relation to DialogueFrancis V. TisoIn taking on the task of co-editing Buddhist-Christian Studies, it would seem appropriate to provide some background by way of introduction. Being a disciple of Brother David Steindl-Rast, O.S.B., a man who refuses to sign his name with capital letters, since the late 1960s, it goes against my grain to write too much about myself. Therefore, the following comments are meant (...) also to serve as a foreword to the current issue.My own background in Buddhist-Christian studies has its roots in ongoing collaboration with Br. David, who will be remembered for his decades-long study of Zen and his affectionate rapport with the San Francisco Zen Center community, among others. I later studied interreligious dialogue and its theological implications with George Rupp and Harvey Cox at Harvard Divinity School. In order to let my studies sink their roots into contemplative soil, I served as Br. David's assistant at the Benedictine Grange and then went on to edit theological books at the Seabury Press in New York. Thanks to the kindness of the late and revered Alex Wayman, I was able to complete a doctorate in Buddhist Studies at Columbia University and Union Theological Seminary, where I gained some ability to work with Pali, Sanskrit, and Tibetan. I sought additional tutorial guidance from José Pereira of Fordham University, a polymath scholar deeply appreciated for his extraordinary ability to introduce students to the intricacies of Sanskrit literature. Our lengthy conversations about the Baroque Scholastic Catholic theologians formed my eagerness to welcome at least three of the articles in the current issue of BCS. After the doctorate, I continued to pursue study and contemplative practice in Europe and Asia, developing collegial friendships, especially with members of the International Association for Tibetan Studies. In 2003, M. R. John C. Wester, auxiliary bishop of San Francisco, asked me to participate in the Northern California Zen/Ch'an–Catholic Dialogue that had arisen from earlier dialogue programs in various monastic milieux such as Gethsemane and New Camaldoli. In the context of that dialogue, I was asked to serve the United States Conference of Catholic Bishops as associate director of the Secretariat for Ecumencial and Interreligious Affairs in Washington, DC, in 2004.Given this ongoing interplay in my own life between scholarly research and contemplative [End Page iii] practice, it is my hope that BCS will continue to nurture the same interests in its readership. Good scholarship and commitment to the goals of spiritual inquiry should also enrich the dialogue between Buddhists and Christians in various parts of the world. In a recent publication,1 Taigen Dan Leighton describes Dogen's methods with regard to reading: "So in addition to just reading through this material, the student of Zen may likely want to chew slowly at times, find pieces that are especially provocative, stimulating, or unsettlingly challenging, and take a while to consider, reflect, and digest." This is exactly what the Christian contemplative does in lectio divina. Moreover, to persons inclined to this kind of inquiry, even scholarly research gives rise to creative and, at times, truly contemplative insight. Thus even a journal committed to scholarship might find comfort in the "apophatic" methods of Buddhist or Christian contemplatives. Taigen reminds us that Zen sitting practice (zazen) is not the suppression of content. In fact, understanding is expected:Dogen is clearly not recommending zazen as mere blank, mindless sitting. Although he frequently criticizes practice concerned with achievement, or with reaching for particular schematized stages of development, Dogen regularly asks his monks if they thoroughly understand. He is suggesting a practice that is informed by intense inquiry into the ancient teachings, sayings, and dialogues, as well as into our present immediate experience. Throughout formal meditation as well as in our everyday activity, Dogen encourages vivid attention and awareness.In practice, this is nothing less than the interactive application of the principles of the great teachings on emptiness. As a method, the philosophical analysis of emptiness came to have an enormous impact on the Ch'an and Zen traditions; it was a method of "negation" in the sense that it could be... (shrink)

Exception from Informed Consent (EFIC) regulations detail specific circumstances in which Institutional Review Boards (IRB) can approve studies where obtaining informed consent is not possible prior to subject enrollment.To better understand how IRB members evaluate community consultation (CC) and public disclosure (PD) processes and results, semi-structured interviews of EFIC-experienced IRB members were conducted and analyzed using thematic analysis.Interviews with 11 IRB members revealed similar approaches to reviewing EFIC studies. Most use summaries of CC activities to determine community (...) members’ attitudes; none reported using specific criteria nor recalled any CC reviews that resulted in modifications to or denials of EFIC studies. Most interviewees thought metrics based on Community VOICES’s domains (feasibility, participant selection, quality of communication, community perceptions, investigator/IRB perceptions) would be helpful.IRB members had similar experiences and concerns about reviewing EFIC studies. Development of metrics to assess CC processes may be useful to IRBs reviewing EFIC studies. (shrink)

An unlinked seroprevalence study of HIV and other viruses was conducted on pregnant women on the Caribbean island of Grenada in 1994. Investigators were from both the developed world and the Grenadian Ministry of Health . There was then no board on Grenada to protect research subjects or review ethical aspects of studies. Nurses from the MOH were asked to verbally inform their patients about the study, and request that patients become subjects of the study and give blood for (...) screening. If consent was given nurses took blood and administered a survey about each subjects' knowledge of HIV transmission routes. Nurses shared a spoken dialect and cultural heritage with prospective subjects and were probably more effective than foreign researchers at informing subjects. Informed consent was obtained with a simplified consent form supplemented by conversation with each prospective research subject. Facilitating discussion between people with common cultural backgrounds helps apply the Western approach to informed consent to communities in the developing world. Researchers must disclose all information to nurses or other mediators, and ensure that nurses disclose as much information as possible to prospective subjects. So modified, informed consent maintains respect for persons and becomes applicable and relevant to various cultures. (shrink)