ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...) rule following, the framework is designed to build researchers’ capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers’ intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these principles, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the proposed framework. (shrink)

mHealth devices and applications, with their wide accessibility and ease of use, have the potential to address persistent inequities in biomedical research participation. Yet, while mHealth technologies may facilitate more inclusive research participation, negative features of some unregulated use in research — misleading enrollment practices, the promotion of secondary mHealth applications, discriminatory profiling, and poorer quality feedback due to dependencies on biased data and algorithms — may threaten the trust and engagement of underrepresented individuals and communities. To maximize the participation (...) of currently disenfranchised groups, those involved in unregulated mHealth research must become aware of potential risks, adopt targeted education policies, audit algorithms for hidden biases, and engage citizen scientists and other community members to identify and forestall possible harms. (shrink)

Excerpt: "In order to help ethics students in our universities and outside of them to better understand the meaning of morality and the end of ethical effort, this book has been written." In the accompanying notes, I have taken the I want to make some suggestions to teachers, some of whom have less years of teaching behind the ones I have, I do not apologize for writing in a clear, non-technical style, or for minimizing references to literature in other languages. (...) These things are in accordance with the purpose of the volume. "This edition contains a unique biography of the great George Stuart Fullerton, where he discusses in detail his life and his work as a philosopher that helps to understand the different motivations that led to the writings of his works. It also contains explanatory notes to better understand the whole narrative. (shrink)

A sample of 259 South African managers completed a survey originally administered by Nel (1992). The results of the current study indicated a favourable move on four of the 15 questionable actions used to assess each group's ethical predisposition. Furthermore, the grand means for the two temporal-based samples also provided anecdotal evidence of a positive transition. Virtually identical results were in evidence when the segment of 89 top managers was compared to the sample of its higher level peers from the (...) earlier study by Nel. The results support the premise that today's South African managers have a more ethical predisposition than did their peers of some 20 years prior to them. However, the study concurrently documents the reality that there is ample room for further improvement. (shrink)

The recent explosion of interest in epigenetics is often portrayed as the dawning of a scientific revolution that promises to transform biomedical science along with developmental and evolutionary biology. Much of this enthusiasm surrounds what we call the epigenetic switch hypothesis, which regards certain examples of epigenetic inheritance as an adaptive organismal response to environmental change. This interpretation overlooks an alternative explanation in terms of coevolutionary dynamics between parasitic transposons and the host genome. This raises a question about whether epigenetics (...) researchers tend to overlook transposon dynamics more generally. To address this question, we surveyed a large sample of scientific publications on the topics of epigenetics and transposons over the past fifty years. We found that enthusiasm for epigenetics is often inversely related to interest in transposon dynamics across the four disciplines we examined. Most surprising was a declining interest in transposons within biomedical science and cellular and molecular biology over the past two decades. Also notable was a delayed and relatively muted enthusiasm for epigenetics within evolutionary biology. An analysis of scientific abstracts from the past twenty-five years further reveals systematic differences among disciplines in their uses of the term epigenetic, especially with respect to heritability commitments and functional interpretations. Taken together, these results paint a nuanced picture of the rise of epigenetics and the possible neglect of transposon dynamics, especially among biomedical scientists. (shrink)

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)

In September 2009, the First Circuit Court of Appeals decided Blue Cross & Blue Shield v. AstraZeneca Pharmaceuticals LP, part of the class action suit known as In re Pharmaceutical Industry Average Wholesale Price Litigation. The First Circuit upheld a Massachusetts District Court finding that AstraZeneca violated Massachusetts’ consumer protection laws by manipulating the “average wholesale price” of its physician-administered injectable cancer drug Zoladex, leading to overpayment by the government, third-party payers, and consumers. This case, which highlights the persistent tension (...) between pharmaceutical pricing flexibility and consumer protection, has important implications for similar pending class actions.Between 1991 and 2003, Medicare, as well as many private insurance companies, pegged reimbursement for certain pharmaceutical products to a national “average wholesale price” for each drug. Although the amended 1991 Medicare Part B regulations3 that introduced the term “average wholesale price” failed to define it explicitly, there is some indication in the legislative history that AWP was intended to refer to the prices that physicians and pharmacists actually pay to the drug manufacturers. (shrink)

Disasters overwhelm resources and threaten the safety and functioning of communities. Mental health and community needs after catastrophic disasters can be substantial, however the effects of traumatic events are not exclusively bad with many people showing individual resilience and some reporting growth. Sustaining the social fabric of the community and facilitating recovery following disaster depends on leadership=s knowledge of a community=s resilience and vulnerabilities as well as an understanding of the distress, disorder, and health risk behavioral responses. A coordinated systems (...) approach across medical care, public health, and emergency response system is necessary to meet the mental health care needs of a disaster region. (shrink)

We compared two digital humanities methods in the analysis of a contested scientific term. “Epigenetics” is as enigmatic as it is popular. Some authors argue that its meaning has diluted over time as this term has come to describe a widening range of entities and mechanisms (Haig, International Journal of Epidemiology 41:13–16, 2012). Others propose both a Waddingtonian “broad sense” and a mechanistic “narrow sense” definition to capture its various scientific uses (Stotz and Griffiths, History and Philosophy of the Life (...) Sciences 38:22, 2016). We evaluated these proposals by first replicating a recent analysis by (Linquist and Fullerton, Theoretical Medicine and Bioethics 42:137–154, 2021). We analyzed the 1100 most frequently cited abstracts on epigenetics across four disciplines: proximal biology, biomedicine, general biology, and evolution. Each abstract was coded for its heritability commitments (if any) and functional interpretation. A second study applied LDA topic modelling to the same corpus, thus providing a useful methodological comparison. The two methods converged on a discipline-relative ambiguity. Within such disciplines as biomedicine or molecular biology that focus on proximate mechanisms, “epigenetic(s)” refers to a range of molecular structures while specifying nothing in particular about their heritability. This proximal conception was primarily associated with the functions of gene regulation and disease. In contrast, a second relatively uncommon sense of “epigenetic(s)” is restricted to a small proportion of evolutionary abstracts. It refers to many of the same molecular structures, but regards them as trans-generationally inherited and associated with adaptive phenotypic plasticity. This finding underscores the benefit of digital tools in complementing traditional conceptual analysis. Philosophers should be cautious not to conflate the relatively uncommon evolutionary sense of epigenetics with the more widely used proximal conception. (shrink)

This paper tells the story of a recent laboratory medicine controversy in the Canadian province of Newfoundland and Labrador. During the controversy, a DAKOAutostainer machine was blamed for inaccurate breast cancer test results that led to the suboptimal treatment of many patients. In truth, the machine was not at fault. Using concepts developed by Bruno Latour and Pierre Bourdieu, we document the changing nature of the DAKO machine’s agency before, during, and after the controversy, and we make the ethical argument (...) that treating the machine as a scapegoat was harmful to patients. The mistreatment of patients was directly tied to a misrepresentation of the DAKO machine. The way to avoid both forms of mistreatment would have been to include all humans and nonhumans affected by the controversy in the network of decision-making. (shrink)

This paper tells the story of a recent laboratory medicine controversy in the Canadian province of Newfoundland and Labrador. During the controversy, a DAKOAutostainer machine was blamed for inaccurate breast cancer test results that led to the suboptimal treatment of many patients. In truth, the machine was not at fault. Using concepts developed by Bruno Latour and Pierre Bourdieu, we document the changing nature of the DAKO machine’s agency before, during, and after the controversy, and we make the ethical argument (...) that treating the machine as a scapegoat was harmful to patients. The mistreatment of patients was directly tied to a misrepresentation of the DAKO machine. The way to avoid both forms of mistreatment would have been to include all humans and nonhumans affected by the controversy in the network of decision-making. (shrink)

In September 2009, the First Circuit Court of Appeals decided Blue Cross & Blue Shield v. AstraZeneca Pharmaceuticals LP, part of the class action suit known as In re Pharmaceutical Industry Average Wholesale Price Litigation. The First Circuit upheld a Massachusetts District Court finding that AstraZeneca violated Massachusetts’ consumer protection laws by manipulating the “average wholesale price” of its physician-administered injectable cancer drug Zoladex, leading to overpayment by the government, third-party payers, and consumers. This case, which highlights the persistent tension (...) between pharmaceutical pricing flexibility and consumer protection, has important implications for similar pending class actions.Between 1991 and 2003, Medicare, as well as many private insurance companies, pegged reimbursement for certain pharmaceutical products to a national “average wholesale price” for each drug. Although the amended 1991 Medicare Part B regulations3 that introduced the term “average wholesale price” failed to define it explicitly, there is some indication in the legislative history that AWP was intended to refer to the prices that physicians and pharmacists actually pay to the drug manufacturers. (shrink)

The history of Christianity's relationship to government is long and complex. This book will attempt to bring order to the chaos by offering essays on how particular branches of the Christian tradition-Catholic, reformed, evangelical, etc.-view the institution of the modern state. The essays will not be limited geographically, but will rather look at each tradition as broadly as possible, from the institutionalized churches of Europe, to the independent Christian movements of Africa, to the vibrant religious marketplace of the United States.

Background In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.Methods Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.Results We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant (...) consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.Conclusions Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in “pantomime community engagement.” This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process. (shrink)

Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a combination of keyword (...) and cited reference search, we identified English-language scientific articles published between 2002 and 2009 that reported analysis of HGDP Diversity Panel samples and/or data. We then reviewed each article to identify the specific research use to which the samples and/or data was applied. Secondary uses were categorized according to the type and kind of research supported by the collection. Results: A wide variety of secondary uses were identified from 148 peer-reviewed articles. While the vast majority of these uses were consistent with the original intent of the collection, a minority of published reports described research whose primary findings could be regarded as controversial, objectionable, or potentially stigmatizing in their interpretation. Conclusions: We conclude that potential risks to participants and communities cannot be wholly eliminated by anonymization of individual data and suggest that explicit review of proposed secondary uses, by a Data Access Committee or similar internal oversight body with suitable stakeholder representation, should be a required component of the trustworthy governance of any repository of data or specimens. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 9-10, October 2012.

Using a U.S. and a Canadian example, in this article we argue that news reports of murder, especially of the heavily covered signal crimes that become part of community storytelling, often employ predetermined formulas that probe intrusively into the lives of those involved in the murder but ultimately come away with only cheaply sketched, stick-figure portraits. The thesis is that crime coverage that is formulaic tends to produce cynicism and a distance between the reader and those involved in the crime. (...) However, a deeper and more caring probe into the causes and consequences of crime could lead the community to wider conversations about responsibility, social justice, and reconciliation. What is required to expand the reporting of murder stories is more of the ethic of care that can serve to both deepen the public's understanding of the individual crime and widen the community's dialogue about its significance. (shrink)

This paper seeks to challenge the “fixed line” between disciplines by exploring the interconnections of Sociology and Caribbean Literature. It highlights the Caribbean author as a social activist and policymaker whose aim is to agitate for improvement in various social conditions. The writings of three Caribbean authors—Erna Brodber of Jamaica, as well Frank McField and Roy Bodden of the Cayman Islands—are examined. Through their published and unpublished works, through their fiction and non-fiction, the interconnection between Sociology and Caribbean Literature is (...) explored. Their writings become alternative narratives that address various sociological issues, as the writers are lauded for their social activism which gave a small community in Jamaica its history and which pleads for the youth and agitates for education in the Cayman Islands. These writers, some of whom are trained sociologists, use their training and knowledge in this field and their expertise in creative writing to demonstrate that the lines of demarcation between the disciplines are becoming increasingly blurred. The paper concludes that this fusing of the disciplines means Caribbean authors can be viewed as social activists and policymakers whose works posit new thoughts and present new possibilities to ailing Jamaica and Cayman societies. (shrink)

A national sample of 362 respondents assessed the ethical predisposition of the American marketplace by calculating a consumer ethics index. The results indicate that the population is quite intolerant of perceived ethical abuses. The situations where consumers are ambivalent tend to be those where the seller suffers little or no economic harm from the consumer's action. Younger, more educated, and higher income consumers appear more accepting of these transgressions. The results provided the basis for developing a four-group taxonomy of consumers (...) which retailers should find insightful in assessing potential consumer actions in a variety of situations. (shrink)

As there cannot be said to be a beaten path in philosophy, and as "Introductions" to the subject differ widely from one another, it is proper that I should give an indication of the scope of the present volume.

Pt. 1. The content of consciousness.--pt. 2. The external world.--pt. 3. Mind and matter.--pt. 4. Other minds and the realm of minds.

Over the last several decades Ellen Dissanayake has developed an evolutionary theory of art that views all art as having evolved for the function of promoting group cohesion. This theory is not without its critics, yet it has received little empirical attention. In this article I propose a more modest formulation of Dissanayake’s hypothesis and proceed to test it using a cross-cultural analysis. I rely on the ethnographic databases of the electronic Human Relations Area Files as well as the Standard (...) Cross-Cultural Sample to compare proxies for group cohesion with measures of ritual art, a subset of art that I theoretically define. While my results cannot decisively prove or disprove Dissanayake’s hypothesis, they do lend empirical support to her views. This is promising not only for her views but for outlining ways of empirically testing other views in evolutionary aesthetics. (shrink)