Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States.

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

The principle of informed consent obligates physicians to explain possible side effects when prescribing medications. This disclosure may itself induce adverse effects through expectancy mechanisms known as nocebo effects, contradicting the principle of nonmaleficence. Rigorous research suggests that providing patients with a detailed enumeration of every possible adverse event—especially subjective self-appraised symptoms—can actually increase side effects. Describing one version of what might happen (clinical “facts”) may actually create outcomes that are different from what would have happened without this information (another (...) version of “facts”). This essay argues that the perceived tension between balancing informed consent with nonmaleficence might be resolved by recognizing that adverse effects have no clear black or white “truth.” This essay suggests a pragmatic approach for providers to minimize nocebo responses while still maintaining patient autonomy through “contextualized informed consent,” which takes into account possible side effects, the patient being treated, and the particular diagnosis involved. (shrink)

Some writers claim that ethicists involved in assessing future technologies like nanotechnology and human enhancement devote too much time to debating issues that may or may not arise, at the expense of addressing more urgent, current issues. This practice has been claimed to squander the scarce and valuable resource of ethical concern. I assess this view, and consider some alternatives to ‘speculative ethics’ that have been put forward. I argue that attempting to restrict ethical debate so as to avoid considering (...) unacceptably speculative scenarios would not only leave scientific progress devoid of ethical guidance, but would also rule out some of our most important ethical projects. I conclude that the issue of speculation is a red herring: what is most important is not that ethicists concentrate on current issues or those that are most likely to arise; but that ethicists, scientists, and others focus on maximising what is most valuable. (shrink)

As knowledge increases about the human genome,prenatal genetic testing will become cheaper,safer and more comprehensive. It is likelythat there will be a great deal of support formaking prenatal testing for a wide range ofgenetic disorders a routine part of antenatalcare. Such routine testing is necessarilycoercive in nature and does not involve thesame standard of consent as is required inother health care settings. This paper askswhether this level of coercion is ethicallyjustifiable in this case, or whether pregnantwomen have a right to (...) remain in ignorance ofthe genetic make-up of the fetus they arecarrying. While information gained by genetictesting may be useful for pregnant women whenmaking decisions about their pregnancy, it doesnot prevent harm to future children. It isargued that as this kind of testing providesinformation in the interests of the pregnantwomen and not in the interests of any futurechild, the same standards of consent that arenormally required for genetic testing should berequired in this instance. (shrink)

We consider the current debate between bioconservatives and their chief opponents — whom we dub bioliberals — about the moral acceptability of human enhancement and the policy implications of moral debates about enhancement. We argue that this debate has reached an impasse, largely because bioconservatives hold that we should honour intuitions about the special value of being human, even if we cannot identify reasons to ground those intuitions. We argue that although intuitions are often a reliable guide to belief and (...) action, there are circumstances in which they are not reliable. Intuitions — including intuitions about enhancement — are subject to various cognitive biases rendering them unreliable in some circumstances. We argue that many bioconservative intuitions about enhancement are examples of such unreliable intuitions. Given this, it is unrealistic of bioconservatives to expect others to rely on their unexamined intuitions. Furthermore, refusing to engage in debates about the reasons and values that underpin their intuitions about enhancement will have the effect of making bioconservative voices less relevant in policy debates about enhancement than they would otherwise be. (shrink)

Some research is too risky to be conducted on anyone whose life expectancy is more than a few hours. Yet sometimes, the research can still be carried out using subjects who are brain dead or are soon to undergo a terminal wean, and who have articulated values that inclusion in the study can honor. So argues a team of ethicists and researchers at M.D. Anderson Cancer Center, where such research was recently undertaken.

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women 'choosing' to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not (...) seem adequate to capture concerns and intuitions that have a strong grip outside this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women's agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be 'for' or 'against' women's access to cesarean delivery in the absence of traditional medical indications – and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach but, rather, taking the value of women's autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women's full inclusion in a safe and positive birth process. (shrink)

Is it conceptually possible for one person to ‘remember’ the experiences of another person? Many philosophical discussions of personal identity suppose that this is possible. For example, some philosophers believe that our personal identity through time consists in the continuation of our mental lives, including the holding of memories over time. However, since a person’s memories are necessarily memories of her own experiences, a definition of personal identity in terms of memory risks circularity. To avoid this, we must invoke the (...) concept of ‘quasi-memory’. From my quasi-memory of doing x, I cannot infer that I did x; but I can infer that somebody did x. It is then a further question as to whether the person who did x is me, the answer to which will depend upon what we believe personal identity to consist in. Quasi-memory, then, allows us to separate the concept of memory from the concept of personal identity. (shrink)

(No abstract is available for this citation).

There is an apparent epidemic of mental illness. At the end of 2011, untreated mental disorders accounted for 13% of the total global burden of disease, and for 25.3% and 33.5% of all years lived with a disability in low-and middle-income countries, respectively. Depression affects 350 million people globally and is the leading cause of disability. One in five U.S. adults takes psychiatric medication. One study found that by age 32, 50% of people surveyed qualified for an anxiety disorder, more (...) than 40% for a mood disorder, and more than 30% for substance dependence. Another study reported that... (shrink)

Is it conceptually possible for an event, L, to be the cause of an earlier event, E? Some writers have employed the so-called bilking argument to attempt to show that the idea of such backwards causation is incoherent . According to this argument, if we are presented with what someone claims to be a case of backwards causation, it would be possible in principle to wait for E to occur, and then intervene to prevent the occurrence of L, thus demonstrating (...) that E could not have been caused by L after all. Moreover, if our attempts to bilk L-type events having observed E-type events always fail, we have grounds to argue that any causal relationship between the two is not one of backwards causation, but of ordinary, forwards, earlier-to-later causation.Does the bilking argument succeed in showing backwards causation to be incoherent? Before answering this question, let us deal with a far simpler reason for deeming backwards causation incoherent, whose elucidation now will be useful later. To those attracted to the view that temporal order is determined by causal order, 1 backwards causation may seem incoherent because on this view a cause is by definition earlier than its effect. I do not take issue with this view, and wish my conception of backwards causation to be compatible with it. 2 By ‘backwards causation’, I mean causation that runs in the opposite direction to some other causal processes, such that the temporal order entailed by such backwards causation is the reverse of that entailed by those other causal processes. In most philosophical discussions of backwards causation, we are at least implicitly given reasons to believe that these other causal processes dictate the …. (shrink)

This paper explores the ethics of deceased‐directed donation (DDD) and brings a unique perspective to this issue—the relevance of providing family‐centered care and culturally sensitive care to deceased donors, potential recipients, and their families. The significance of providing family‐centered care is becoming increasingly prevalent, specifically in pediatric healthcare settings. Therefore, this topic is especially relevant to those working with and interested in pediatrics. As the world is becoming more diverse with globalization, assessing the cultural aspect of the ethics of DDD (...) is increasingly salient. We provide a brief overview of DDD across the globe, review prominent arguments both for and against DDD, consider family‐centered and culturally specific considerations, and offer considerations for the development of a policy or guideline. We determine that the practice of DDD is ethically defensible in certain circumstances and congruent with providing both family‐centered and culturally sensitive care. Our analysis is relevant to any country with a diverse population and any healthcare provider or institution that operates under a framework of family‐centered care, such as those in pediatric hospitals. (shrink)

The United States’ continuing engagements in Iraq and Afghanistan have focused reflection on how best to wage counterinsurgency, recognizing that the blurred lines between combatants and noncombatants that characterize this type of fighting broaden the range of opportunities and obligations counterinsurgents face. While many have looked to jus in bello constraints on the just conduct of war to guide this effort, jus post bellum requirements for the just cessation of conflict provide a better framework in which to discuss how soldiers (...) and marines may effectively and ethically pursue insurgents while simultaneously building host-nation capacity to govern politically, economically, and militarily. This paper demonstrates how jus post bellum obligations provide an important structure within which counterinsurgents may understand the full range of their obligations to the host nation and its population, best pursue insurgents while honoring their commitment to noncombatant immunity, and set the standard for what constitutes the end of the conflict and the appropriate point for military disengagement. (shrink)

The early church did not provide us with any normative statement on wealth and poverty, but it did give us clear witness to the hazards of wealth and to the abiding necessity of alms for the poor.

This volume is fourth in the series of annuals created under the auspices of The Association for Feminist Ethics and Social Theory. The topics covered herein—from peacekeeping and terrorism, to sex trafficking and women's paid labor, to poverty and religious fundamentalism—are vital to women and to feminist movements throughout the world.

This essay examines the determination by Cartesians to explain the maternal imagination's alleged role in the formation of birthmarks and the changing notion of monstrosity. Cartesians saw the formation of birthmarks as a challenge through which to demonstrate the heuristic capacity of mechanism. Descartes claimed to be able to explain the transmission of a perception from the mother's imagination to the fetus' skin without having recourse to the little pictures postulated by his contemporaries. La Forge offered a detailed account stating (...) that the failure to explain the maternal imagination's impressions would cast doubt on mechanism. Whereas both characterized the birthmark as a deformation or monstrosity in miniature, Malebranche attributed a role to the maternal imagination in fashioning family likenesses. However, he also charged the mother's imagination with the transmission of original sin. (shrink)

Although data sharing platforms host diverse data types the features of these platforms are well-suited to facilitating biomarker research. Given the current state of biomarker discovery, an innovative paradigm to accelerate biomarker discovery is to utilize platforms such as Vivli to leverage researchers' abilities to integrate certain classes of biomarkers.

The child was 2 years, 8 months old and weighed 25 pounds, one-fifth the weight of her mother, for whom she was to be the bone marrow donor. The mother had suffered a relapse of acute myelogenous leukemia; her physicians recommended a bone marrow transplant. The child was the closest human leukocyte antigen match and thus the best donor candidate for her mother's transplant.

Ethical sensitivity is a precursor to mora1 judgment in that a person must recognize the existence of an ethical problem before such a problem can be resolved. It is an important concept, yet it has received little attention from ethics scholars. This preliminary and exploratory study indicates that ethical sensitivity can be identified in viewers' reactions to and evaluations of ethically controversial television news stories, that diferent levels of ethical sensitivity are evident in discussions of television news stories, and that (...) there are at least 3 dimensions by which ethnic sensitivity may be evaluated: time, breadth, and depth. (shrink)

Multiple groups, including the National Bioethics Advisory Commission, the American Society of Clinical Oncology, the National Coalition of Comprehensive Cancer Centers, Workgroup 6 of the Summit Series on Cancer, PRIM&R, the Bell Report, and prominent ethicists have called for replacing the current system of local institutional review with central review for multisite national trials. We argue that this need is particularly acute in pediatric oncology, as shown by the experience of the Children's Oncology Group.

The early modern period is arguably the most pivotal of all in the study of the mind, teeming with a variety of conceptions of mind. Some of these posed serious questions for assumptions about the nature of the mind, many of which still depended on notions of the soul and God. It is an era that witnessed the emergence of theories and arguments that continue to animate the study of philosophy of mind, such as dualism, vitalism, materialism, and idealism. -/- (...) Covering pivotal figures in philosophy such as Descartes, Hobbes, Kant, Leibniz, Cavendish, and Spinoza, Philosophy of Mind in the Early Modern and Modern Ages provides an outstanding survey of philosophy of mind of the period. Following an introduction by Rebecca Copenhaver, sixteen specially commissioned chapters by an international team of contributors discuss key topics, thinkers, and debates, including: -/- Hobbes, Descartes’ philosophy of mind and its early critics, consciousness, the later Cartesians, Malebranche, Cavendish, Locke, Spinoza, Descartes and Leibniz, perception and sensation, desires, mental substance and mental activity, Hume, and Kant. Essential reading for students and researchers in philosophy of mind, enlightenment philosophy, and the history of philosophy, Philosophy of Mind in the Early Modern and Modern Ages is also a valuable resource for those in related disciplines such as religion, history of psychology, and history of science. (shrink)

This essay aims to elucidate how multiple voices and traditions should interact with one another in the practice of ethics. First, it explores some of the major ways in which questions of bodily autonomy function in secular feminist and Jewish bioethical discourses. It then uses case studies to illuminate ways each discourse's concepts of bodily autonomy can be deeply problematic, and argues that the strengths in each discourse can serve as important correctives for the weaknesses in the other. It suggests (...) that some formal features of rabbinic texts can serve as a model for a discourse of constant and animated mutual correction. Finally, it examines two case studies in light of this model. (shrink)

Volume 19, Issue 7, July 2019, Page 69-71.

The article “Extending Research Protections to Tribal Communities” examines whether it is appropriate to extend the Belmont Report’s ethical principles beyond the individual...

En proposant une analyse des travaux portant sur la mixité en Europe, l'article cherche à expliciter la façon dont des contextes historiographiques nationaux distincts génèrent des approches différentes. Dans la majorité des cas, les études sur l'éducation des filles constituent le point de départ d'une réflexion sur la mixité ou coéducation. En pays anglo-saxon, l'essor des travaux portant sur le genre encourage le développement d'analyse sur la mixité scolaire alors qu'en France le poids des catégories sociales plus que des catégories (...) de sexe marque les travaux sur l'éducation. Depuis quelques années cependant, se dessinent un certain nombre de convergences dans les questionnements ainsi que de nouvelles pistes de recherche, notamment par le biais du comparatisme. (shrink)

Interviews with 111 African-American and European-Americans investigated racial differences in viewer evaluations of ethically controversial TV news stories. The study focused on judgments of whether three news stories (Genniger Flowers's alleged affair with Bill Clinton, a hit-and-run accident, and racial discrimination by Realtors) should be aired, the criteria applied in reaching those judgements, and the indications of reasons to attend to or to reject each story. No simple relationship was found between race and judgments of whether the stories should be (...) aired, but when story relevance was considered, the relationship became clearer. There appears to be a complex relationship between the viewers' lived experience, story content, and story evaluation. (shrink)