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 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)

The development of technologies for gene editing in the wild has the potential to generate tremendous benefit, but also raises important concerns. Using some form of public deliberation to inform decisions about the use of these technologies is appealing, but public deliberation about them will tend to fall back on various forms of heuristics to account for limited personal experience with these technologies. Deliberations are likely to involve narrative reasoning—or reasoning embedded within stories. These are used to help people discuss (...) risks, processes, and fears that are otherwise difficult to convey. In this article, we identify three forms of collective narrative that are particularly relevant to debates about modifying genes in the wild. Our purpose is not to privilege any particular narrative, but to encourage people involved in deliberations to make these narratives transparent. Doing so can help guard against the way some narratives—referred to here as “crafted narratives”—may be manipulated by powerful elites and concentrated economic interests for their own strategic ends. (shrink)

Since 1980, the number of twin births in the United States has increased 76 percent, and the number of triplets or higher‐order multiples has increased over 400 percent. These increases are due in part to increased maternal age, which is associated with spontaneous twinning. But the primary reason for these increases is that more and more people are undergoing fertility treatment. Despite an emerging (but not absolute) consensus in the medical literature that multiples, including twins, should be a far less (...) frequent outcome of fertility treatment, American clinicians currently practice fertility medicine in ways likely to result in twins and, occasionally, triplets—often, they tell us, at the request of their patients. At first blush, one might conclude that these practice patterns show that patients and their doctors have weighed the risks associated with twins against the benefits of swiftly completing their families and decided that the risks are worth taking. That is, their requests for twins must represent their free and informed choices. But there are reasons to be skeptical of this interpretation, including that the preferences of many patients seem to be very strongly shaped, if not sometimes completely constrained, by concerns about costs—costs that mainly result from the routine exclusion of in vitro fertilization from health insurance coverage. It is quite possible, we believe, that these cost concerns actually undermine the autonomy of fertility patients, pushing many of them to take risks with their health and the health of their hoped‐for future children. (shrink)

Many older people need external support for their daily living. A large minority of older adults with low or modest pension incomes face financial strains from the high cost of illness, and many older people in urban areas live in social isolation. Indeed, population aging has become a policy topic of concern. The policy debate since the end of the twentieth century about the future of public pensions and health and long‐term care programs has increasingly framed the growing numbers of (...) older people in alarmist terms. Unfounded claims about the unaffordability and unsustainability of social policies supporting older people have become common currency, often disguised as concerns about intergenerational justice. Such claims and concerns hinder clear thinking about proper social and fiscal policies, housing, health care, and labor markets to safeguard the well‐being of older people in aging societies. (shrink)

This essay introduces a special report from The Hastings Center entitled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose, which grew out of a project supported by the John S. and James L. Knight Foundation. This multiauthored report offers wide‐ranging assessments of increasing polarization and partisanship in American government and politics, and it proposes constructive responses to this in the provision of objective information, institutional reforms in government and the electoral system, and a reexamination of cultural and (...) political values needed if democracy is to function well in a pluralistic and diverse society. The essays in the special report explore the norms of civic learning and institutions, social movements, and communal innovations that can revitalize civic learning in practice. This introductory essay defines and explains the notion of civic learning, which is a lynchpin connecting many of the essays in the report. Civic learning pertains to the ways in which citizens learn about collective social problems and make decisions about them that reflect the duties and responsibilities of citizenship. Such learning can occur in many social settings in everyday life, and it can also be facilitated through participation in the processes of democratic governance on many levels. Civic learning is not doctrinaire and is compatible with a range of public goals and policies. It is an activity that increases what might be called the democratic capability of a people. (shrink)

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)

Is it ever fair to limit treatment for diseases like glioblastoma for which prognosis is poor? Because resources are finite and health care spending limits the other possible uses for those resources, limiting access to an intervention that does not generate benefits is ethically sound. Ignoring the balance of benefits and burdens associated with treatment ignores opportunity costs and leads us to treat some lives as more valuable than others. Although it is ethically sound to set limits on medical care, (...) I argue that biological age is a poor criterion for allocating resources. (shrink)

Is it ever fair to limit treatment for diseases like glioblastoma for which prognosis is poor? Because resources are finite and health care spending limits the other possible uses for those resources, limiting access to an intervention that does not generate benefits is ethically sound. Ignoring the balance of benefits and burdens associated with treatment ignores opportunity costs and leads us to treat some lives as more valuable than others. It also ignores evidence that patients and families, when presented with (...) adequate information about the benefits and burdens of aggressive treatment compared with palliative care, often prefer the palliative care option.Should the limitations we set on the availability of care be greater for older people than younger people? Since the 1980s, scholars have called for strong age rationing of medical care in which Medicare would not pay for anything other than palliative care after they have achieved average life expectancy. (shrink)

Hastings Center Report, Volume 52, Issue 5, Page 42-43, September–October 2022.

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)

Objective: We hypothesized that the reasons behind this tension are complex and can be understood better by applying social psychology theory.Design: A qualitative methodology was drawn on for data collection and thematic analysis, with focus group discussions adopted for interviews with patient families and ICU physicians. Additionally, we used a social psychology theory, the reasoned action approach (RAA) framework, to understand these tensions.Setting: Two 15-bedded ICUs of an academic university–affiliated teaching hospital in Singapore.Subjects: A total of 72 physicians and family (...) members of older ICU patients (>70 years old).Measurements and Main Results: The primary analysis revealed five areas of tension around prognostication in the ICU. These dealt with issues of divergent views, different role expectations, conflicting emotional responses, and issues of communication and trust. Further analysis helped to identify underlying factors leading to tensions and behaviors. Differences in prognostication and in expectation of outcomes between clinicians and family members were the main cause of tensions. When the RAA framework was applied, these tensions could be predicted early on and understood more clearly.Conclusions: Tensions revolve around losing control of the patient’s care, differences between hopeful expectations and clinical prognostication, perceived biases of physicians, and underlying mistrust between families and physicians. (shrink)

Vaccine hesitancy is a major public health challenge, and racial disparities in the acceptance of vaccines is a particular concern. In this essay, we draw on interviews with mothers of Black male adolescents to offer insights into the reasons for the low rate of vaccination against the human papillomavirus among this group of adolescents. Based on these conversations, we argue that increasing the acceptance of HPV and other vaccines cannot be accomplished merely by providing people with more facts. Instead, we (...) must address the pervasive racial discrimination in the United States that undermines trust in social institutions, including the health care system. In the short term, it may be helpful to increase the number of clinicians of color working in the health system, but more fundamental changes are required. The U.S. must adopt and implement policies that dismantle structural racism if it hopes to produce greater trust and community‐oriented thinking on behalf of people who have been exploited for centuries. (shrink)

During the past two years, colleagues and I at The Hastings Center have worked on a project, funded by the John S. and James L. Knight Foundation, that seeks to improve the quality of public deliberation, particularly about science. Specifically, we seek to improve the public's capacity for civic learning, which is our term for the ability of people living in a democracy to learn at least the basics of complex policy issues, discuss them, and make civically responsible decisions about (...) them. There are no quick fixes. The forces that have undermined trust in society and that inhibit a mutually respectful deliberation about these issues have built up over centuries. (shrink)

This essay introduces a special report from The Hastings Center entitled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose, which grew out of a project supported by the John S. and James L. Knight Foundation. This multiauthored report offers wide‐ranging assessments of increasing polarization and partisanship in American government and politics, and it proposes constructive responses to this in the provision of objective information, institutional reforms in government and the electoral system, and a reexamination of cultural and (...) political values needed if democracy is to function well in a pluralistic and diverse society. The essays in the special report explore the norms of civic learning and institutions, social movements, and communal innovations that can revitalize civic learning in practice. This introductory essay defines and explains the notion of civic learning, which is a lynchpin connecting many of the essays in the report. Civic learning pertains to the ways in which citizens learn about collective social problems and make decisions about them that reflect the duties and responsibilities of citizenship. Such learning can occur in many social settings in everyday life, and it can also be facilitated through participation in the processes of democratic governance on many levels. Civic learning is not doctrinaire and is compatible with a range of public goals and policies. It is an activity that increases what might be called the democratic capability of a people. (shrink)

A response to Anne Haehl's commentary, “Fertility Treatment: Medically Necessary?”.

A response to Anne Haehl's commentary, “Fertility Treatment: Medically Necessary?”.

The idea of the Internet as Gutenberg 2.0—a true revolution in disseminating information—is now a routine part of how bioethics education works. The Internet has become indispensable as a channel for sharing teaching materials and connecting learners with a central platform that houses materials to support an online or hybrid curriculum or a traditional course. A newer idea in bioethics education reflects developments in web-based medical education more broadly and draws on design principles developed for the Internet. This approach to (...) online bioethics education requires thinking about web-based learning as an engaging, potentially immersive experience, about learners' expectations concerning web-based learning, and about differences between self-directed learning and teaching to support group learning. In clinician education in bioethics, the interrelated goals of ethical reflection and practice for professionals and of continuous quality improvement in health care are supported by a focus on real-world challenges and by encouraging the habits of self-directed learning. In this paper, we describe how an international, interdisciplinary team used a web-based framework to develop a health care ethics casebook whose content, design, and pedagogy were tailored to the needs and expectations of health care professionals and other audiences in Singapore; we also explain how they used this framework to make the casebook accessible nationwide and to support cross-cultural learning. (shrink)