Both articles in the November‐December 2021 issue of the Hastings Center Report reflect bioethics’ growing interest in questions of justice, or more generally, questions of how collective interests constrain individual interests. Hugh Desmond argues that human enhancement should be reconsidered in light of developments in the field of human evolution. Contemporary understandings in this area lead, he argues, to a new way of thinking about the ethics of enhancement—an approach that replaces personal autonomy with group benefit as the primary criterion (...) for deciding what enhancements are acceptable. In the second article, Johannes Kniess considers the many attempts within bioethics to draw on John Rawls's work to discuss health care access and social determinants of health, and he comes across as moderately optimistic that Rawls's theory of justice has ongoing relevance. (shrink)

The emerging phenomenon of genetic paternity testing shows how good science and useful social reform can run off the rails. Genetic paternity testing enables us to sort out, in a transparent and decisive way, the age-old but traditionally never-quite-answerable question of whether a child is genetically related to the husband of the child's mother. Given the impossibility of settling this question for certain, British and American law has long held that a biological relationship must almost always be assumed to exist. (...) According to what is known as the “marital presumption” or “presumption of legitimacy,” a child born to a woman within a marital relationship is assumed to be the biological child of the woman's husband unless he was absent, impotent, or sterile. In other words, if paternity was not a physical impossibility for the husband, there was a nearly irrebuttable presumption that he was the father of the child. The husband was locked into the role of fatherhood. a. (shrink)

The lead article in this January‐February 2021 issue—the first of the Hastings Center Report's fiftieth year of publication—does not set out to change medicine. It tries instead to understand it. In “A Heart without Life: Artificial Organs and the Lived Body,” Mary Jean Walker draws on work in phenomenology and on empirical research with people who have received artificial heart devices to argue that such devices may have two very different effects on how a patient experiences the body and the (...) self. Several other pieces in this issue address the ongoing slew of patient care and health policy problems surrounding the Covid‐19 pandemic, and a special report titled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose considers the requirements for public involvement in policy‐making about bioethical issues. (shrink)

The new generative artificial intelligence (AI) tools, and especially the large language models (LLMs) of which ChatGPT is the most prominent example, have the potential to transform many aspects o...

A majority opinion seems to have emerged in scholarly analysis of the assortment of technologies that have been given the label “synthetic biology.” According to this view, society should allow the technology to proceed and even provide it some financial support, while monitor­ing its progress and attempting to ensure that the development leads to good outcomes. The near‐consensus is captured by the U.S. Presidential Commission for the Study of Bioethical Issues in its report New Directions: The Ethics of Synthetic Biology (...) and Emerging Technologies, which arguably marked the end of a preliminary round of analysis about the ethical and policy questions raised by synthetic bi­ology. Like a number of other, earlier documents issued by various groups around the world, the re­port called attention to questions about how the technology will be used; whether it might be mis­used; what sorts of accidents might happen along the way; the economic, environmental, and social impacts of the eventual applications; whether the very idea of “synthetic biology” should be trou­bling; and how the debate over all of these ques­tions will be conducted. Also like most similar documents, however, while it called for careful monitoring and oversight of technology, it did not recommend any significant new constraints on its development and use. The commission's stance was that it would be “imprudent either to declare a moratorium on synthetic biology until all risks can be determined and mitigated, or to simply ‘let science rip,’ regardless of the likely risks.”In this report, we will take stock of the current consensus, comment on some of the major points of disagreement, and identify the next steps for the debate. In part I, we offer a brief overview of the research and applications commonly grouped together under the heading of synthetic biology, partly in order to set the stage for the rest of the discussion and partly because we want to highlight some conceptual problems that attend the very la­bel given this field. In parts II, III, and IV, we take up, respectively, three broad classes of concerns that arise in the context of synthetic biology: con­cerns about the intrinsic or inherent value of do­ing synthetic biology, concerns about the concrete harms and benefits of doing synthetic biology, and concerns about justice. Addressing these concerns requires a method for bringing the public's values to bear on policy‐making concerning emerging biotechnologies; in part V, we discuss the chal­lenges in developing such a method. (shrink)

Advancing neuroscience is one of many topics that pose a challenge often called “the alignment problem”—the challenge, that is, of assuring that science policy is responsive to and in some sense squares with the public's values. This issue of the Hastings Center Report launches a series of scholarly essays and articles on the ethical and social issues raised by this vast body of medical research and bench science. The series, which will run under the banner “Neuroscience and Society,” is supported (...) by the Dana Foundation and seeks to promote deliberative public engagement, broadly understood, about neuroscience. As a social goal, deliberative public engagement is both ubiquitous and elusive—called for everywhere yet difficult to undertake at a national level on a complex scientific topic. To be meaningful, deliberative public engagement must occur in many locations in a society and be carried forward by many actors. Scholarly writing might contribute in several ways. (shrink)

Generative artificial intelligence (AI) has the potential to transform many aspects of scholarly publishing. Authors, peer reviewers, and editors might use AI in a variety of ways, and those uses might augment their existing work or might instead be intended to replace it. We are editors of bioethics and humanities journals who have been contemplating the implications of this ongoing transformation. We believe that generative AI may pose a threat to the goals that animate our work but could also be (...) valuable for achieving those goals. In the interests of fostering a wider conversation about how generative AI may be used, we have developed a preliminary set of recommendations for its use in scholarly publishing. We hope that the recommendations and rationales set out here will help the scholarly community navigate toward a deeper understanding of the strengths, limits, and challenges of AI for responsible scholarly work. (shrink)

The release of genetically engineered organisms into the shared environment raises scientific, ethical, and societal issues. Using some form of democratic deliberation to provide the public with a voice on the policies that govern these technologies is important, but there has not been enough attention to how we should connect public deliberation to the existing regulatory process. Drawing on lessons from previous public deliberative efforts by U.S. federal agencies, we identify several practical issues that will need to be addressed if (...) relevant federal agencies are to undertake public deliberative activities to inform decision‐making about gene editing in the wild. We argue that, while agencies may have institutional capacity to undertake public deliberative activities, there may not be sufficient political support for them to do so. Advocates of public deliberation need to make a stronger case to Congress about why federal agencies should be encouraged and supported to conduct public deliberations. (shrink)

A range of views on the morality of synthetic biology and its place in public policy and political discourse.

The new generative artificial intelligence (AI) tools, and especially the large language models (LLMs) of which ChatGPT is the most prominent example, have the potential to transform many aspects o...

How strong is the argument for requiring public deliberation by very large publics—at national or even global levels—before moving forward with efforts to use gene editing on wild populations of plants or animals? Should there be a general moratorium on any such efforts until such broad public deliberation has been successfully carried out? This article works toward recommendations about the need for and general framing of broad public deliberation. It finds that broad public deliberation is highly desirable but not flatly (...) necessary before moving forward with any local cases of gene editing in the wild. It also finds that broad public deliberation would be most helpful in generating very general guidance and is unlikely to be appropriate for specific cases. Broad public deliberation is most helpful for cases that involve higher levels of uncertainty and moral ambiguity, but separating out a distinct class of cases for deliberation is not yet possible. (shrink)

I was recently asked to report on editorial trends in the Hastings Center Report, past and future. What I reported is that HCR has been going in two seemingly contrasting directions. One has to do with moral decision‐making in clinical ethics—the core theme in bioethics for fifty years, but still developing. A second editorial trend is treatment of larger social and political issues that bear on health, such as public health interventions and access to health care. I could also have (...) noted a continuing stream of pieces on emerging technologies, from whole‐genome screening for newborns to artificial intelligence in clinical diagnoses to the so‐called de‐extinction of extinct animals and plants through various genetic and reproductive tricks. This January‐February 2019 issue of HCR reflects all these trends. (shrink)

Much work in bioethics tries to sidestep bedrock questions about moral values. This is fine if we agree on our values; arguments about human enhancement suggest we do not. One bedrock question underlying these arguments concerns the role of emotion in morality: worries about enhancement are derided as emotional and thus irrational. In fact, both emotion and reason are integral to all moral judgment.

The emergence of de‐extinction is a study in technological optimism. What has already been accomplished in recovering ancient genomes, recreating them, and reproducing animals with engineered genomes is amazing but also has a long ways to go to achieve “de‐extinction” as most people would understand that term. Still, with some caveats in place, creating a functional replacement for an extinct species may sometimes be doable, and given the right goals, might sometimes make sense. The International Union for Conservation of Nature (...) guidelines for de‐extinction do a reasonable job of keeping the caveats in place and clarifying the goals. In fact, given the right caveats about what de‐extinction can accomplish, we should pay a lot of attention to the technology and should think carefully about the goals. Not only has the technology been advancing, but our environmental standards have been getting looser and more flexible, providing less guidance for implementing the technology. The guiding ideals for conservation are often explained as a choice between John Muir, founder of The Sierra Club, and Gifford Pinchot, who helped create the U.S. Forest Service. Muir argued for preserving some places in the world in their natural state because of their great value and beauty. Pinchot, by contrast, was bluntly utilitarian. He argued for trying to keep some natural places more or less undamaged so that we could use them later. There has long been dissatisfaction with this choice, and in the last couple of decades, a number of prominent voices have proposed a “gardening ethic” as a new standard that combines elements of Muir and Pinchot. A gardening ethic is supposed to both celebrate the land and declare that it must now be managed. But what would good gardening mean when it comes to de‐extinction? (shrink)

Bioethicists have sometimes regarded the opioid epidemic as a problem with obvious answers and thus no need for the field's conceptual analysis. Yet, as three essays in the July‐August 2020 issue of the Hastings Center Report demonstrate, the opioid crisis contains a knot of distinctions and puzzles to be sorted out. Travis N. Rieder examines, for example, what is fundamentally driving the crisis—access to the drugs or large societal problems such as poverty and joblessness. The role of choice in addiction, (...) the effects of moral condemnation on approaches to addiction, and what treatment should look like are among the puzzles Hanna Pickard explores, while Daniel S. Goldberg focuses on the common and harmful conflation of the public health problems of substance misuse and pain. These philosophical and bioethical questions point in widely different directions, lying both inside and outside bioethics. They point toward systemic societal factors that determine health and well‐being yet have seemed outside bioethics' largely clinical boundaries. And they point toward a deeper look at the very idea of autonomy—an examination of a topic clearly within bioethics yet occurring at the fringes of its usual constructs. (shrink)

Hastings Center Report, Volume 52, Issue 5, Page 2-2, September–October 2022.

In some sense, argues Christopher Meyers in the lead article in this, the July‐August 2021, issue of the Hastings Center Report, to be a good ethicist is to be an activist. The question for the ethicist, and for Meyers, is about how hard and far to push: how much personal risk to shoulder, how much to tick off colleagues, how much institutional disruption to create, how much to look like an angry protester. Meyers argues for aiming at the middle, in (...) two senses. In a time of anger and activism about relentless, pervasive, overwhelming wrongs, the question of balance is increasingly front of mind. A set of commentaries we solicited both welcome Meyers's call for activism and push for more. (shrink)

Hastings Center Report, Volume 52, Issue 2, Page 2-2, March‐April 2022.

I was recently asked to report on editorial trends in the Hastings Center Report, past and future. What I reported is that HCR has been going in two seemingly contrasting directions. One has to do with moral decision‐making in clinical ethics—the core theme in bioethics for fifty years, but still developing. A second editorial trend is treatment of larger social and political issues that bear on health, such as public health interventions and access to health care. I could also have (...) noted a continuing stream of pieces on emerging technologies, from whole‐genome screening for newborns to artificial intelligence in clinical diagnoses to the so‐called de‐extinction of extinct animals and plants through various genetic and reproductive tricks. This January‐February 2019 issue of HCR reflects all these trends. (shrink)

In a 2015 Hastings Center Report essay, Robert Truog and his coauthors argued that the clinical ethics portion of medical education should cast both a wider and a finer net than is sometimes realized. Many of the morally important moments in patient care are missed if we teach only general moral principles, they held; we also need to give attention to an indefinite stream of “microethical” decisions in everyday clinical practice. In the current issue, Truog plays out a similar theme (...) as he discusses the moral significance of touching a patient and asks how artificial intelligence and other emerging technologies may change this ancient part of the physician‐patient relationship. And one of the articles in this issue examines the significance of clinicians’ relationships with other clinicians. Donna Chen and colleagues propose, in effect, that “teamwork” has become part of the ethics of everyday clinical practice—a new addition to what Larry Churchill and David Schenck called the “healing skills.”. (shrink)

Hastings Center Report, Volume 52, Issue 3, Page 2-2, May–June 2022.

Hastings Center Report, Volume 51, Issue 5, Page 2-2, September‐October 2021.

The lead article in the Hastings Center Report's November‐December 2020 issue reconsiders the rationale for requiring that patients have a prescription from a physician to obtain a drug. Madison Kilbride, Steve Joffe, and Holly Fernandez Lynch conclude that growing respect for patient autonomy should lead to a new default for drug access: drugs should be available over the counter unless there are special concerns about harms to third parties or about patients' ability to make decisions for themselves. This conclusion would (...) be a substantial reorientation of drug policy in the United States. Bioethics at a societal level is a theme in the second article, “The Social Risks of Science,” and throughout the issue. (shrink)

This issue of the Hastings Center Report features a couple of interesting takes on the governance challenges of emerging technologies. In an essay on the National Academies of Science, Engineering, and Medicine report published this February on human germ-line gene editing, Eric Juengst, a philosopher at the University of North Carolina, argues that the NASEM committee did not manage to rethink the rules. Juengst reaches what he calls an “eccentric conclusion”: “The committee's 2017 consensus report has been widely interpreted as (...) ‘opening the door’ to inheritable human genetic modification and holding a line against enhancement interventions. But on a close reading it does neither.” In the column Policy and Politics, Sarah Chan, a chancellor's fellow at the University of Edinburgh, discusses the emerging science of “organoids,” “embryoids,” and “synthetic human entities with embryo-like features” and calls for a sustained effort to rethink the rules for embryo research. (shrink)

Two articles in the March‐April 2021 issue of the Hastings Center Report consider alterations to traditional informed consent. In “The Consent Continuum: A New Model of Consent, Assent, and Nondissent for Primary Care,” Marc Tunzi and colleagues argue that, in primary care settings, patient consent should be understood as taking a range of forms depending on the procedure, the patient, and the patient‐care context. Traditional informed consent is at the ceremonious end; for many things done in these settings, the authors (...) assert, assent or even nondissent is fine. In the lead article, health policy scholars Stephanie Morain and Emily Largent consider another continuum for informed consent, this one occurring with pragmatic research, at the intersection of clinical care with research. (shrink)

The lead article in this, the September‐October 2020, issue of the Hastings Center Report considers the use of metaphors in communications with clinicians and patients.

: A comparison of casuistry with the strain of particularism developed by John McDowell and David Wiggins suggests that casuistry is susceptible to two very different mistakes. First, as sometimes developed, casuistry tends toward an implausible rigidity and systematization of moral knowledge. Particularism offers a corrective to this error. Second, however, casuistry tends sometimes to present moral knowledge as insufficiently systematized: It often appears to hold that moral deliberation is merely a kind of perception. Such a perceptual model of deliberation (...) cannot offer a convincing account of the possibility of moral progress. This second problem is one to which particularism is itself prone. To redress it, other aspects of casuistry must be exploited: Casuistry contains an account of presumptive generalizations that explains how moral deliberation might be structured by rules while also depending at critical junctures on perception. (shrink)

Much work in bioethics tries to sidestep bedrock questions about moral values. This is fine if we agree on our values; arguments about human enhancement suggest we do not. One bedrock question underlying these arguments concerns the role of emotion in morality: worries about enhancement are derided as emotional and thus irrational. In fact, both emotion and reason are integral to all moral judgment.

Can we make wise policy decisions about still‐emerging technologies—decisions that are grounded in facts yet anticipate unknowns and promote the public's preferences and values? There is a widespread feeling that we should try. There also seems to be widespread agreement that the central element in wise decisions is the assessment of benefits and costs, understood as a process that consists, at least in part, in measuring, tallying, and comparing how different outcomes would affect the public interest. But how benefits and (...) costs are best weighed when making decisions about whether to move forward with an emerging technology is not clear. Many commentators feel that the weighing is often inadequate or inappropriate. Those who argue for a “precautionary” approach to the weighing do so precisely because they feel the need for a restraint on the dominant decision‐making tools and processes for assessing outcomes.This Hastings Center special report examines those tools and processes, taking the method known as cost‐benefit analysis as a starting point. In U.S. governance, CBA, sometimes informed by risk assessment, is the most widely used and extensively studied method, and authoritative reports on genetic and reproductive technologies often use language suggestive of cost‐benefit analysis. There is also a long‐running debate about the role of values in CBA and other formal impact assessment mechanisms—and about how those mechanisms compare to the precautionary principle. The guiding idea in the report is to engage in a close examination of the strengths and limits of CBA for ensuring that emerging technologies are used in ways that square with the public's values, drawing on applications of synthetic biology to illustrate and sharpen the analysis and then considering corrections to CBA and some alternative methodologies that handle values differently. (shrink)

Concerns about the sacred—common in everyday moral thinking—have crept into bioethics in various forms. Further, given a certain view of the metaphysics of morals that is now widely endorsed in Western philosophy, there is in principle no reason that judgments about the sacred cannot be part of careful and reasoned moral deliberation.

A competent person can avoid the onset of dementia by refusing life‐sustaining medical care and by voluntarily stopping eating and drinking, bringing life to an end well before any health crisis. A competent person can also try to limit the duration of dementia by drafting an advance directive that sets bounds on the life‐sustaining care, including artificial nutrition and hydration, that medical caregivers can provide when the person no longer has the capacity to make her own medical decisions. But between (...) these two strategies there can lie a significant gap. A person could live with moderate to severe dementia for a considerable time, no longer able to voluntarily stop eating and drinking yet also not yet requiring the life‐sustaining care forbidden by advance directive.This gap has been much discussed in recent years in the Hastings Center Report. Several years ago (in the May‐June 2014 issue), Paul Menzel and M. Colette Chandler‐Cramer argued for what they described as a moderate correction to the dominant view that food and water should always be offered to a patient with dementia if the patient expresses a desire to eat and drink. The problem is taken up again by the legal scholar Norman L. Cantor in this issue (July‐August 2018), and Cantor, too, tries to find a moderate alternative. (shrink)

Generative artificial intelligence (AI) has the potential to transform many aspects of scholarly publishing. Authors, peer reviewers, and editors might use AI in a variety of ways, and those uses might augment their existing work or might instead be intended to replace it. We are editors of bioethics and humanities journals who have been contemplating the implications of this ongoing transformation. We believe that generative AI may pose a threat to the goals that animate our work but could also be (...) valuable for achieving those goals. In the interests of fostering a wider conversation about how generative AI may be used, we have developed a preliminary set of recommendations for its use in scholarly publishing. We hope that the recommendations and rationales set out here will help the scholarly community navigate toward a deeper understanding of the strengths, limits, and challenges of AI for responsible scholarly work. (shrink)

The lead article in this issue of the Hastings Center Report explores the ideas underpinning the Precision Medicine Initiative, the effort announced by President Obama in 2015 to promote the development of treatments adjusted to genetic and other variations. Authors Maya Sabatello and Paul Appelbaum hold that the effort works by appealing to a sense of collective identity and shared commitment—an understanding that they call the “PMI nation.” But what are the moral implications of this idea? Sabatello and Appelbaum's question (...) about the impact of an imagined community is an unusual way of exploring a set of values questions. In the second article, Johann Brännmark defends what is, at least in bioethics, an unusual philosophical framework for moral values. Brännmark starts by calling attention to large, never-quite-solved problems with the field's going way of understanding personhood and autonomy, and then argues that the body of tradition, law, and international governance known as the human-rights framework offers a solution to those problems. And a supplement to this issue offers a set of essays on a topic outside the usual range for bioethics: the prospect of “de-extinction”—that is, of using genetic and reproductive technologies to construct simulacra of extinct animals that might eventually be introduced into the wild. (shrink)

This issue of the Hastings Center Report features three articles exploring aspects of decision-making for others. In the first two, the focus is on the limits of surrogate decision-makers’ authority when the surrogates’ judgments about a patient's treatment conflict with the physicians’. If a physician decides that a patient will not benefit from CPR, for example, but the patient's surrogate insists on it, is the physician obliged to proceed with the procedure? Or can the physician, pointing to a duty to (...) provide good care to the patient and not to cause the patient to suffer, get a do-not-resuscitate order for the patient—even in the face of the surrogate's objections? These are the questions that animate the first article, in which a group of authors report on a policy implemented at Massachusetts General Hospital to help doctors who face this dilemma. The second article, by physician Jeffrey Berger, flips the questions. If a physician decides that a patient's intractable suffering requires palliative sedation, may the surrogate prevent it anyway? Or can the physician, pointing to a duty to alleviate the suffering, administer palliative sedation even in the face of the surrogate's objections? Such circumstances, says Berger, show the need for conceptual work delineating the limits of surrogates’ authority and practical work on mechanisms for doing so—protecting patients and giving physicians a clear route to follow. (shrink)

How should we think about synthetic biology—about the potential benefits and risks of these applications as well as the very idea of designed, extensively genetically modi­fied organisms? The lead article in this report sets out our thinking, but the article is rounded out with nine commentaries that sometimes expand on and sometimes argue with our perspective. Jonathan Wolff, a philosopher at the University College of London and a member of the Nuffield Council on Bioethics, and Mark Bedau, a philosopher at (...) Reed College and a participant in several projects aimed at de­veloping artificial cells, discuss the potential consequences of synthetic biology and suggest some reasons for a precau­tionary approach to deliberating about the consequences. Jane Calvert, reader in science, technology, and innovation studies at the University of Edinburgh and a member of the Nuffield Council on Bioethics working party on emerging biotechnologies, recommends, however, that deliberation about the governance of emerging technologies focus less on consequences than on aims and purposes.Gigi Gronvall, senior associate at the Center for Health Security in the University of Pittsburgh Medical Center, and David Relman, a microbiologist and immunologist at the Stanford School of Medicine, offer contrasting per­spectives about a question we raise concerning “the eth­ics of knowledge”—the values at stake in generating and disseminating potentially dangerous information. Gaymon Bennett offers some ruminations on the questions we raise about how synthetic biology might change the human re­lationship to nature in morally significant ways. He argues, too, that we can think about the ethics of synthetic biology more effectively by getting “upstream” in another way—by sitting next to the bioengineers doing the work and study­ing their “everyday practice” rather than by paying attention only to what is thought and said about their work. Colleen Grogan, professor at the University of Chicago's School of Social Administration and an expert on democratic partici­patory processes in governance, builds on our comments about the challenge of creating a meaningful public dialog about synthetic biology. Jim Thomas, a researcher with the ETC Group, challenges our view of how the public debate about synthetic biology is trending. And Sarah Carter, a policy analyst with the J. Craig Venter Institute, puts our discussion about synthetic biology in the context of debates about other new products and technologies. (shrink)

Several items in this issue of the Hastings Center Report try to fill gaps or resolve uncertainties in the regulatory systems that govern research on human subjects. The biggest of these items is a special report, published as a supplement to the issue, that considers a long‐running and vexing regulatory problem: the uncertain relationship between the two sets of federal regulations for research. The goal of the report is to provide guidance.The lead article inside the issue addresses a problem generated (...) by newly emerging genomic research. How should potential subjects be informed of the possibility of incidental findings? When and how should such findings be passed along to them? Paul Appelbaum and colleagues argue that routine approaches to informed consent will probably not work, and they develop four alternative approaches. One of the essays in the issue, by Joseph Fins of New York Cornell Medical Center, poses questions about the relationship between regulations and ethics. “Is it always enough,” Fins asks, “to abide by the rules and regulations for human subjects research? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Real-life BioethicsGregory E. KaebnickMy academic training is in philosophy, and I tend to see the problems in bioethics as philosophical problems. And so they often are. What are moral values? What is the nature of rationality? These are certainly philosophical problems. But at the same time, they are not strictly philosophical problems, insofar as they are not the special purview of the field of philosophy. They require a broader (...) treatment, and that broader treatment might even lead us to believe that the standard philosophical treatment is unsatisfactory.In one way or another, several items in this issue of the Hastings Center Report raise questions about the standard philosophical answers to issues in bioethics. The challenge is most explicit in Barry Hoffmaster’s article, “The Rationality and Morality of Dying Children.” Hoffmaster launches a frontal assault on the typical philosophical understanding of ethics, applied ethics, and bioethics. “There is more rationality in our lives than there is in our philosophy,” he begins. The usual take in philosophy on rationality “hides the real nature and extent of the rationality and the morality in our lives because it denigrates, if not ignores, our experience and our creativity.” Closer attention to our experience is therefore needed, and Hoffmaster tries to take a step in that direction by considering anthropological research on how children dying of leukemia learned about their condition and then dealt with that knowledge.The lead article, by Tony Hope and three coauthors, questions standard philosophical approaches to decision-making in a different way. Hope and his colleagues consider whether the concept of authenticity is useful for exploring how patients with anorexia nervosa understand their condition and deal with that knowledge. Further, they ask, if the concept is important for people with anorexia, should it be important for clinicians, who sometimes need to make decisions on behalf of those women? Arguably, they explain, “in respecting autonomy, it is the authentic wishes that should be respected. This would be to give the idea of authenticity a role analogous to that of capacity (competence).”Hope and colleagues are skeptical that “authenticity” can help others make decisions on behalf of women with anorexia nervosa. There is no good way of deciding which decisions would count as “authentic.” But thinking about how to make decisions is not the full extent of bioethics. As the essay by Rebecca Dresser emphasizes, attempting to understand the patient’s experience of illness is another and important part of bioethics, even though bioethicists themselves do not always see it that way. “At times,” writes Dresser, “work in our field conveys the impression that seriously ill patients and their families would be in good shape if clinicians would only do things like give patients the proper information, respect patients’ choices, and follow advance directives.” Just as Hope and colleagues argued for attending more closely to the concept of authenticity, Dresser argues for attending to concepts like dignity, mortality, and grief. These concepts “may be difficult to incorporate into bioethical analysis, but they are the sorts of concerns that matter to people dealing with serious illness.”A bioethics that dealt better with them would still be a philosophical bioethics, but certainly not just a bioethics of philosophy. It would be what Dresser calls a “real-life bioethics.” —GEK [End Page 2]Copyright © 2011 The Hastings Center... (shrink)

As described by Lori Gruen in the Perspective column at the back of this issue, federally supported biomedical research conducted on chimpanzees has now come to an end in the United States, although the wind-down has taken longer than expected. The process began with a 2011 Institute of Medicine report that set up several stringent criteria that sharply limited biomedical research. The National Institutes of Health accepted the recommendations and formed a committee to determine how best to implement them. The (...) immediate question raised by this transition was whether the IOM restrictions should be extended in some form to other nonhuman primates—and beyond them to other kinds of animals. In the lead article in this issue, Anne Barnhill, Steven Joffe, and Franklin Miller consider the status of other nonhuman primates. (shrink)