Volume 24, Issue 12, December 2024, Page 32-34.

In “Obligations of the Gift,” Lee argues that ethical thinking regarding return of genetic research results has been too narrowly focused on individual consent and participants’ “right to kn...

Our study of Moral Uncertainty in Community Health shows that community health practitioners also experience moral stress in relation to flawed systems, societal injustices, and other structural is...

Founded on a commitment to social justice and health equity, community health centers in the United States provide high‐quality primary care to underserved populations and address social drivers of health disparities. Through an examination of two books on the history of community health centers, Peace & Health: How a Group of Small‐Town Activists and College Students Set Out to Change Healthcare, by Charles Barber, and Community Health Centers: A Movement and the People Who Made It Happen, by Bonnie Lefkowitz, this (...) essay provides insight into what it takes to center social justice in community‐based health care organizations. As bioethics reorganizes itself around an emphasis on justice, scholars in bioethics have much to learn from colleagues in community health. (shrink)

Recent reports and papers on chimeric research highlight the promise of chimeric models of human neuropsychiatric disorders to ameliorate human suffering due to autism spectrum disorders, depression, and schizophrenia. These calls, however, typically do not acknowledge, much less address, criticisms of model creation and validation, or concerns about scientific conduct more generally. The ethical justification for the use of nonhuman animals in research depends on the production of benefits to humans based on such research. But the assessment and production of (...) benefits are highly uncertain and rife with both practical and conceptual challenges. This essay provides a general framework for classifying the benefits of biomedical research and then focuses on two factors that directly impact—and threaten—the production of knowledge in research that models neuropsychiatric disorders. (shrink)

When President Obama laid out his vision for the U.S. Precision Medicine Initiative in a 2016 Boston Globe op‐ed, he cautioned, “[I]t only works if we collect enough information first.” “Collecting information” is an apt way to describe the subject of both books reviewed here. Jenny Reardon's The Postgenomic Condition: Ethics, Justice, and Knowledge after the Genome traces the history of the Human Genome Project and efforts around the globe to obtain blood samples to extract not only genetic data but (...) also meaning from them. Barbara Prainsack's Personalized Medicine: Empowered Patients in the 21st Century? concerns the capture of digital, quantifiable, and computable information about nearly all aspects of people's lives in the pursuit of personalized medicine. Reardon and Prainsack critique scientists’ and corporations’ appeals to liberal democracy, justice, and empowerment to collect more and more information about people. They reveal the limitations and frequent superficiality of those appeals and remind us that person‐centric ethics rather than data‐centric research is needed to realize a more democratic, just, and empowered society. (shrink)

This August, I participated in the conference “Genome Editing: Biomedical and Ethical Perspectives,” hosted by the Center for the Study of Bioethics at the University of Belgrade and cosponsored by the Division of Medical Ethics of NYU Langone Health and The Hastings Center. The prime minister of Serbia, Ana Brnabić, spoke of the significance of bringing together an international community of bioethicists, acknowledging that ethical, social, and legal issues surrounding gene editing technologies transcend national boundaries. Europe's (...) Oviedo Convention prohibits human germline gene editing, and UNESCO's Universal Declaration on the Human Genome and Human Rights says that germline editing “could be contrary to human dignity,” an assault on humanity itself. Whether one agrees or not, engaging with the idea forces us to think about what it means to be part of the global human community and about the moral significance of the human genome to creating that community. The conference highlighted for me how challenging having international, much less global, conversations about bioethics can be. (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)

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

In this paper, I interrogate an ethical obligation to participate in genomics research on the basis of solidarity. I explore two different ways in which solidarity is used to motivate participation in genomics research: as an appeal to participate in genomic research because it cultivates solidarity and as an appeal to participate in genomic research because it expresses solidarity. I critique those appeals and draw lessons from them for how we ought to understand solidarity. The working definition of solidarity that (...) I defend is that solidarity involves recognizing another creature, person, or persons as, like ourselves, vulnerable to injustice and entails acting in ways that contribute to creating, reforming, and participating in institutions that are aimed at enhancing their flourishing. I argue that participating in genomics research is not an expression of solidarity. Participation in research may be praiseworthy, a “good thing to do,” but actually cultivating and expressing solidarity requires much more of us. (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)

In “Think Pragmatically: Investigators’ Obligations to Patient-Subjects When Research is Embedded in Care,” Morain and Largent 2023 persuasively argue that the prevailing ways of conceptualizing in...

As the usual regulatory framework did not fit well during the last Ebola outbreak, innovative thinking still needed. In the absence of an outbreak, randomised controlled trials of clinical efficacy in humans cannot be done, while during an outbreak such trials will continue to face significant practical, philosophical, and ethical challenges. This article argues that researchers should also test the safety and effectiveness of novel vaccines in wild apes by employing a pluralistic approach to evidence. There are three reasons to (...) test vaccines in wild populations of apes: i) protect apes; ii) reduce Ebola transmission from wild animals to humans; and iii) accelerate vaccine development and licensing for humans. Data obtained from studies of vaccines among wild apes and chimpanzees may even be considered sufficient for licensing new vaccines for humans. This strategy will serve to benefit both wild apes and humans. (shrink)

Non-human animal models of human diseases advance our knowledge of the genetic underpinnings of disease and lead to the development of novel therapies for humans. While mice are the most common model organisms, their usefulness is limited. Larger animals may provide more accurate and valuable disease models, but it has, until recently, been challenging to create large animal disease models. Genome editors, such as Clustered Randomised Interspersed Palindromic Repeat, meet some of these challenges and bring routine genome engineering of larger (...) animals and non-human primates well within reach. There is growing interest in creating NHP models of brain disorders such as autism, depression and Alzheimer’s, which are very difficult to model or study in other organisms, including humans. New treatments are desperately needed for this set of disorders. This paper is novel in asking: Insofar as NHPs are being considered for use as model organisms for brain disorders, can this be done ethically? The paper concludes that it cannot. Notwithstanding ongoing debate about NHPs’ moral status, animal welfare concerns, the availability of alternative methods of studying brain disorders and unmet expectations of benefit justify a stop on the creation of NHP model organisms to study brain disorders. The lure of using new genetic technologies combined with the promise of novel therapeutics presents a formidable challenge to those who call for slow, careful, and only necessary research involving NHPs. But researchers should not create macaques with social deficits or capuchin monkeys with memory deficits just because they can. (shrink)

What kind of world do we want to live in? It’s rare that we ask this question of ourselves, and even rarer that we get to do so with others. In Altered Inheritance: CRISPR and the Ethics of Human Genome Editing, Francoise Baylis encourages us to keep this question in the forefront of our minds as we think about whether, when, or how to edit the human genome. She is neither an “enthusiastic proponent nor a staunch opponent” of heritable human (...) genome editing. She is, however, very clear that the ethics of human genome editing is not the domain of scientists, ethicists, or elites. Her thesis is that all of us must think together about what our collective future should look like, and then consider whether and how... (shrink)

PrécisFederally Qualified Health Centers (FQHCs) proved to be critical points of access for people of color and other underserved populations during the COVID-19 pandemic, administering 61% of their COVID-19 vaccinations to people of color, compared to the 40% rate for the overall United States’ vaccination effort. To better understand the approaches and outcomes of FQHCs in pandemic response, we conducted semi-structured interviews with FQHC health care providers and outreach workers and analyzed them using an inductive qualitative methodology.

:In a recent paper in Cambridge Quarterly of Healthcare Ethics on the necessary conditions for morally responsible animal research David DeGrazia and Jeff Sebo claim that the key requirements for morally responsible animal research are an assertion of sufficient net benefit, a worthwhile-life condition, and a no-unnecessary-harm condition. With regards to the assertion of sufficient net benefit, the authors claim that morally responsible research offers unique benefits to humans that outweigh the costs and harms to humans and animals. In this (...) commentary we will raise epistemic, practical, and ethical challenges to DeGrazia and Sebo’s emphasis on benefits in the prospective assessment of research studies involving animals. We do not disagree with DeGrazia and Sebo that, at the theoretical level, the benefits of research justify our using animals. Our contribution intends to clarify, at the practical level, how we should understand benefits in the prospective assessment and moral justification of animal research. We argue that ASNB should be understood as an assessment of Expectation of Knowledge Production in the prospective assessment and justification of animal research. EKP breaks down into two further claims: that morally responsible research generates knowledge worth having and that morally responsible research is designed and executed to produce generalizable knowledge. We understand the condition called knowledge worth having as scientists’ testing a hypothesis that, whether verified or falsified, advances an important interest, and production of generalizable knowledge in terms of scientific integrity. Generalizable knowledge refers to experimental results that generalize to a larger population beyond the animals studied. Generalizable scientific knowledge is reliable, replicable, and accurately descriptive. In sum, morally responsible research will be designed and carefully executed to successfully test a hypothesis that, whether verified or falsified, advances important interests. Our formulation of EKP, crucially, does not require further showing that an experiment involving animals will produce societal benefits. (shrink)

The Hastings Center was founded in 1969 to study ethical problems in medicine and biology. The Center arose from a confluence of three social currents: the increased public scrutiny of medicine and its practices, the concern about the moral problems being generated by technological developments, and the desire of one of its founders (Callahan) to make use of his philosophical training in a more applied way. The early years of the Center were devoted to raising money, (...) developing an early agenda of issues, and identifying a cadre of people around the country interested in the issues. Various stresses and strains in the Center and the field are identified, and some final reflections are offered on the nature and value of the contributions made by bioethics as an academic field. (shrink)

Book reviewed in this article: In That Case: Medical Ethics in Everyday Practice. By Alastair Campbell and Roger Higgs. Medical Genetics Casebook: A Clinical Introduction to Medical Ethics Systems Theory. By Colleen D. Clements. Cases in Bioethics from the Hastings Center Report. Edited by Carol Levine and Robert M. Veatch. Hastings‐on‐Hudson.

In lieu of an abstract, here is a brief excerpt of the content:Basic Resources in Bioethics*Mary Carrington Coutts (bio)OrganizationsKennedy Institute of Ethics Georgetown University Washington, DC 20057 National Reference Center for Bioethics Literature 800-MED-ETHX or 202-687-3885The Hastings Center 255 Elm Road Briarcliff Manor, NY 10510 914-762-8500Society for Health and Human Values 6728 Old McLean Village Drive McLean, VA 22101 703-556-9222NOTE: There are numerous organizations in the United States and abroad that deal with bioethical issues. For (...) a more comprehensive listing of those organizations, see:American Hospital Association. Directory of Biomedical Ethics Organizations. Chicago: American Hospital Association, 1989.National Reference Center for Bioethics Literature. International Directory of Bioethics Organizations edited by Robert Iosco. Washington, DC: Georgetown University, 1986.Encyclopedia and DictionaryDictionary of Medical Ethics. Edited by A.S. Duncan, G.R. Dunstan, and R.B. Welborn. New rev. ed. New York: Crossroad, 1981. [End Page 75]Encyclopedia of Bioethics. Edited by Warren T. Reich. 4 vols. New York: Macmillan-Free Press, 1978; or 1982 reprint in 2 volumes available to members of the Kennedy Institute of Ethics through the membership office, 202-687-8099.Online DatabaseBioethicsline. Produced by the Kennedy Institute of Ethics for the National Library of Medicine. Searchable through the MEDLARS system. Focuses on questions of ethics and public policy in the fields of health care and biomedical research. Searches available upon request to the National Reference Center for Bioethics Literature. For information on securing a personal access code from the National Library of Medicine, call 800-638-8480.BibliographiesBibliography of Bioethics. Edited by LeRoy Walters and Tamar Joy Kahn. Washington, DC: Kennedy Institute of Ethics, Georgetown University. Issued annually since 1975. Corresponds to the BIOETHICSLINE database. Provides references to resources on ethical and public policy issues in medicine and biomedical research. Includes abstracts; arranged by broad subject categories.Ethics in Nursing. Edited by Terry Pence. 2nd ed. New York: National League for Nursing, 1986. An annotated bibliography of nursing ethics. Includes author and subject indexes.Goldstein, Doris M. Bioethics: A Guide to Information Sources. Detroit: Gale Research, 1982. A selected, annotated bibliography to the literature of bioethics.The Hastings Center's Bibliography of Ethics, Biomedicine and Professional Responsibility. Compiled by the staff of the Hastings Center. Frederick, MD: University Publications of America, 1984.Medical Ethics: An Annotated Bibliography. Edited by Mark Siegler, Peter A. Singer and David L. Schiedermayer. Philadelphia: American College of Physicians, 1988.Current Awareness ServicesNOTE: Several journals have sections where they highlight new publications. See, for example, the "In The Literature" section of the Hastings Center Report, or the "Medicolegal Reference Shelf" section of Law, Medicine and Health Care. Other services include:BioLaw. Edited by James F. Childress and Ruth D. Gaare. Frederick, MD: [End Page 76] University Publications of America, 1983 to present. Annual with bimonthly updates. (Previous title: Bioethics Reporter.) A compendium of articles and legal documents on ethical and legal issues in medicine, health care administration and human experimentation. Includes the text of important legal decisions in the Resources section.New Titles in Bioethics. Edited by Luanda Fitch Huttlinger. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. Published monthly 1975-1989; quarterly 1990—present. List of acquisitions by the National Reference Center for Bioethics Literature. Organized by subject categories. Includes ordering information for difficult-to-find items. Annual cumulation available.Scope Notes Series. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. A series of issue briefs including annotated bibliographies on the following popular bioethical topics:No 1. Dangerousness, September 1982, 5 p.No 2. Living Wills and Durable Powers of Attorney: Advance Directive Legislation and Issues, Revised February 1990, 15 p.No 3. Ethics Committees in Hospitals, Revised June 1989, 12 p.No 4. Diagnosis Related Groups and the Prospective Payment System, June 1984, 11 p.No 5. Baby Fae, January 1985, 19 p.No 6. Surrogate Mothers, Revised January 1988, 12 p.No 7. Withholding or Withdrawing Nutrition or Hydration, Revised September 1988, 12 p.No 8. AIDS: Law, Ethics and Public Policy, April 1988, 12 p.No 9. Bioethics Audiovisuals 1982 to Present, September 1988, 12 p.No 10. Ethical Issues in... (shrink)

Abstract:Gene editors such as CRISPR could be used to create stronger, faster, or more resilient nonhuman animals. This is of keen interest to people who breed, train, race, and profit off the millions of animals used in sport that contribute billions of dollars to legal and illegal economies across the globe. People have tried for millennia to perfect sport animals; CRISPR proposes to do in one generation what might have taken decades previously. Moreover, gene editing may facilitate enhancing animals’ capacities (...) beyond their typical limits. This paper describes the state of animal use and engineering for sport, examines the moral status of animals, and analyzes current and future ethical issues at the intersection of animal use, gene editing, and sports. We argue that animal sport enthusiasts and animal welfarists alike should be concerned about the inevitable use of CRISPR in sport animals. Though in principle CRISPR could be used to improve sport animals’ well-being, we think it is unlikely in practice to do so. (shrink)

Background COVID-19 has greatly impacted the health of incarcerated individuals in the US. The goal of this study was to examine perspectives of recently incarcerated individuals on greater restrictions on liberty to mitigate COVID-19 transmission.Methods We conducted semi-structured phone interviews from August through October 2021 with 21 people who had been incarcerated in Bureau of Prisons (BOP) facilities during the pandemic. Transcripts were coded and analyzed, using a thematic analysis approach.Results Many facilities implemented universal “lockdowns,” with time out of the (...) cell often limited to one hour per day, with participants reporting not being able to meet all essential needs such as showers and calling loved ones. Several study participants reported that repurposed spaces and tents created for quarantine and isolation provided “unlivable conditions.” Participants reported receiving no medical attention while in isolation, and staff using spaces designated for disciplinary purposes (e.g., solitary housing units) for public health isolation purposes. This resulted in the conflation of isolation and discipline, which discouraged symptom reporting. Some participants felt guilty over potentially causing another lockdown by not reporting their symptoms. Programming was frequently stopped or curtailed and communication with the outside was limited. Some participants relayed that staff threatened to punish noncompliance with masking and testing. Liberty restrictions were purportedly rationalized by staff with the idea that incarcerated people should not expect freedoms, while those incarcerated blamed staff for bringing COVID-19 into the facility.Conclusions Our results highlighted how actions by staff and administrators decreased the legitimacy of the facilities’ COVID-19 response and were sometimes counterproductive. Legitimacy is key in building trust and obtaining cooperation with otherwise unpleasant but necessary restrictive measures. To prepare for future outbreaks facilities must consider the impact of liberty-restricting decisions on residents and build legitimacy for these decisions by communicating justifications to the extent possible. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 10.2 (2000) 175-188 [Access article in PDF] Scope Note 38 Bioethics Resources on the Web * Once described as an "enormous used book store with volumes stacked on shelves and tables and overflowing onto the floor" (Pool, Robert. 1994. Turning an Info-Glut into a Library. Science 266 (7 October): 20-22, p. 20), Internet resources now receive numerous levels of organization, from basic directory (...) listings to elaborate "links" (cross-references to other Internet documents) that flash and glow in the dark. In many ways, the Internet functions as a direct extension of the traditional library. Following linked references across various sites is an electronic version of browsing library stacks, and the serendipitous discoveries made while "surfing the Net" recall the wonders of physically going "book-to-book." Although many of the Internet's best aspects augment library strengths by eliminating physical distance from sources, Net resources pose unique problems for researchers. It is not always clear who is responsible for the content of Web documents, when the document was produced, or how often (if ever) it is updated. Internet resource tools, then, must enable researchers to identify appropriate resources and to evaluate what they find when they get there. Web Research as Taking "Snapshots" Given the Internet's visual nature and fluid content, the process of conducting research on the Web has been likened to taking an informal picture of information on a specific date at a particular time. This metaphor also conveys the "zoom-in" aspect of searching through Web pages by going from general to specific categories. In the first section of this Scope Note, National Reference Center for Bioethics Literature (NRCBL) staff present a snapshot of bioethics resources taken during the spring months of 2000. Entries are divided into the categories of directories, electronic journals, full-text documents, news/current awareness, and teaching resources. In the two subsequent sections, this series of categories is repeated for entries on a specific topic within bioethics-genetics-and again for general search and evaluation tools. Where a Web site may contain pages applicable [End Page 175] to more than one category, multiple entries are made for that site with appropriate information for each category.Much as telecommunication advances have strengthened the relationship of patients and providers as partners, the dynamic nature of the Internet acknowledges that the researcher functions as a librarian whenever accessing the Web. It is our hope that BIOETHICSLINE and the other NRCBL databases not only will enable researchers to search the Web more efficiently, but also will help them to evaluate what they find when they get there. Bioethicsline on the Web: An International Plan in Progress Once only available through libraries, the U.S. National Library of Medicine (NLM), the funding agency for the ongoing development of the BIOETHICS LINE® database from the Kennedy Institute, has provided free Web access to that database of 63,000 citations since September 1998 through Internet Grateful Med. Plans are now underway to eliminate such specialty databases and incorporate all citations into PubMed (for journal articles) or LOCATORplus (for book-like materials and chapters in books). Both of these databases are likewise available at no cost on the Web. In the transition to PubMed and LOCATORplus some features of BIOETHICSLINE that presently are available may be lost. Researchers are encouraged to contact the National Reference Center for Bioethics Literature with search requests or for search strategy assistance with either the current or the future system ([email protected]).The inclusion of bioethics citations in PubMed and LOCATORplus will have several advantages. First, unique keywords from the Bioethics Thesaurus will be considered for inclusion in Medical Subject Headings (MeSH), the indexing vocabulary for PubMed and LOCATORplus, thereby enhancing retrieval of relevant clinical literature by offering more precise terminology covering ethical issues. Second, it will be easier to identify foreign-language materials, which are not currently included in the scope of BIOETHICSLINE. Third, the updating schedule will become more frequent. On the other hand, there may be some loss of searching precision because certain specialized features... (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S50-S56, March‐April 2022.

The authors respond to a letter by Mitchell Berger in the March‐April 2024 issue of the Hastings Center Report concerning their essay “Securing the Trustworthiness of the FDA to Build Public Trust in Vaccines.”.

Ontology development methodologies emphasise knowledge gathering from domain experts and documentary resources, and knowledge representation using an ontology language such as OWL or FOL. However, working ontologists are often surprised by how challenging and slow it can be to develop ontologies. Here, with a particular emphasis on the sorts of ontologies that are content-heavy and intended to be shared across a community of users (reference ontologies), we propose that a significant and heretofore under-emphasised contributor of challenges during ontology development is (...) the need to create, or bring about, consensus in the face of disagreement. For this reason reference ontology development cannot be automated, at least within the limitations of existing AI approaches. Further, for the same reason ontologists are required to have specific social-negotiating skills which are currently lacking in most technical curricula. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:President’s Council on BioethicsEdmund D. Pellegrino (bio) and F. Daniel Davis (bio)Approximately two weeks before what was to have been its final meeting, the White House dissolved the President’s Council on Bioethics by terminating the appointments of its 18 members. The letters of dismissal, dated 10 June 2009, informed the members that their service on the Council would end with the close of business the next day.The Council’s (...) term was set to expire on 30 September 2009. After President Obama’s election in November and during the transition, we were advised to proceed on the assumption that the Council would be permitted to cease on that date. Reasons for the abrupt move to disband the Council are unknown. We have accepted the fact that we Council members served at the pleasure of the President and that he simply exercised his rightful prerogative. No explanation is therefore required.Some observers have speculated that the action was retaliatory. They related to the fact that several members of the Council disagreed with the President’s stem cell policy in a signed statement published in the Hastings Center’s Bioethics Forum. Others have speculated that the move was pre-emptive. At its final meeting, scheduled for 25–26 June, the Council was set to sign-off on two of its final publications. One was a comprehensive report on the ethics of organ transplantation, and the other a white paper entitled Health Care and the Common Good. The aim was immediately to release the latter as a contribution to the intensifying debate about health care reform. Health Care and the Common Good could well have aided rather than impeded the President’s drive to better control health care costs and achieve universal coverage. The Council report attempted to ground both goals in the ethical framework of, as the title indicates, the common good of all Americans.In his letter terminating the members’ appointments, Assistant to the President for Presidential Personnel Don Gips said that the President “recognizes the values of having a commission of experts in bioethical issues to provide objective and non-ideological bioethics advice to his administration.” Gips went on to say that the President is “currently rethinking the purposes and goals of such a bioethics commission, and is carefully considering a revitalized mission and mandate.” And, [End Page 309] responding to media enquiries, White House press officer Reid Cherlin explained that the President’s Council was terminated because it was a “philosophically leaning advisory group” and, according to a New York Times account by Nicholas Wade, “because it favored discussion over developing a shared consensus.” As for the ultimate outcome of the President’s “rethinking,” Cherlin indicated that President Obama will appoint a new commission with the mandate of offering “practical policy options” in bioethics.In the light of our experiences with the Council, we leave it with hopes that certain questions of national importance will be addressed. In light of the nature of federal advisory commissions, what is or are the proper roles of a national bioethics commission? If the aim is to provide advice and counsel to the President or, perhaps to the U. S. Congress, is that advice best rendered as a group consensus or as an in-depth exploration of the inevitably conflicting ethical perspectives on a given issue? How should such a commission be constituted—with what sorts of individuals? And what is the nature of the expertise that they individually and collectively bring to the commission’s functions? If the commission is to promote public debate and discussion, how exactly should it go about that task? And how is the efficacy of a commission to be assessed? Such questions inevitably lead us deep into contested territory, as the experience of this Council has shown: into the intersections of politics, religion, and science and into the relations between practice and theory—between policy and what some seem to deride as “philosophy.” Indeed, policy without an underlying philosophy is an edifice without a foundation; philosophy without policy is a foundation without an edifice.At the last meeting of the Council in March 2009, we launched a discussion of these questions with the... (shrink)

I want to get both personal and philosophical in this piece. I want to reflect on how my relationship with Sue Sherwin has fostered my own relational autonomy. At the same time, I want to discuss what theories of relational autonomy, like Sue's, add to the bioethics literature on autonomy. With this second objective, I hope to begin clearing up some confusion that I see in this literature about the nature of relational autonomy.Sue was my PhD supervisor, but more (...) than that, she has been my mentor and my role model. I doubt I would still be part of the discipline of philosophy if it weren't for Sue. I came to Dalhousie University as a PhD student in 1995 with a burning love for philosophy but an intense dislike for... (shrink)

The 1994 edition is here enlarged with new sections on the goals and allocation of medicine and human cloning. There is no index.

Life Choices is the second edition of a collection of “some of the very best articles published in the Hastings Center Report over the last 28 years”. The collection has two main aims: to provide a challenging text for classrooms and to serve as a testimony to the achievements of the Hastings Center. The first edition was published in 1994 to mark the 25th anniversary of the Hastings Center's foundation. The Hastings Center, (...) based in New York state, is the oldest independent, non-partisan interdisciplinary research institute of its kind in the world and has become a highly influential organisation. The center's mission is the study of the moral problems that arise out of the rapid advances in medicine and biology, and collaboration with policy makers, both in the private and public sphere, to aid the analysis of the ethical dimension of their work. The collection is organised around themes which reflect the center's research …. (shrink)

Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set (...) out a vision for a more equitable and collaborative genomics where wider communities, including social, ethnic, and other communities that share a particular trait, are included in the research as peers and collaborators, not solely as objects of study. (shrink)

Policy‐makers, bioethicists, and patient advocates have been engaged in a fierce battle about the merits and potential harms of a federal right‐to‐try law. This debate about access to investigational medical products has raised profound questions about the limits of patient autonomy, appropriate government regulation, medical paternalism, and political rhetoric. For example, do patients have a right to access investigational therapies, as the right‐to‐try movement asserts? What is government’s proper role in regulating and facilitating access to drugs that are still in (...) development? In this review, we analyze the history of the right‐to‐try movement, review the arguments put forth by supporters and opponents of the legislation, and consider the movement’s consequences. Two possible scenarios may emerge. One is that the right‐to‐try pathway may fail to meaningfully increase patient access to investigational products. Alternatively, certain companies may attempt to rely on the federal right‐to‐try legislation to sell investigational products, taking advantage of the provision that allows for direct costs, as there is currently no clear mechanism for enforcement or monitoring of cost calculations. (shrink)

Pellegrino was there at the beginning of the field. In the 1950s and 60s, before there was a Kennedy Institute of Ethics or a Hastings Center; before the word ‘bioethics’ itself was coined, Pellegrino was writing articles such as "Ethical Considerations in the Practice of Medicine and Nursing," published in 1964. He was among those who started the Society for Health and Human Values—a precursor organization to the American Society for Bioethics and Humanities. He was the (...) founding editor of the Journal of Medicine and Philosophy at a time when the notion that there was a relationship between philosophy and medicine was foreign to both physicians and philosophers. The authors of the articles published in the very .. (shrink)

It is often assumed that engaging in a one‐on‐one dialogue with a tutor is more effective than listening to a lecture or reading a text. Although earlier experiments have not always supported this hypothesis, this may be due in part to allowing the tutors to cover different content than the noninteractive instruction. In 7 experiments, we tested the interaction hypothesis under the constraint that (a) all students covered the same content during instruction, (b) the task domain was qualitative physics, (c) (...) the instruction was in natural language as opposed to mathematical or other formal languages, and (d) the instruction conformed with a widely observed pattern in human tutoring: Graesser, Person, and Magliano's 5‐step frame. In the experiments, we compared 2 kinds of human tutoring (spoken and computer mediated) with 2 kinds of natural‐language‐based computer tutoring (Why2‐Atlas and Why2‐AutoTutor) and 3 control conditions that involved studying texts. The results depended on whether the students' preparation matched the content of the instruction. When novices (students who had not taken college physics) studied content that was written for intermediates (students who had taken college physics), then tutorial dialogue was reliably more beneficial than less interactive instruction, with large effect sizes. When novices studied material written for novices or intermediates studied material written for intermediates, then tutorial dialogue was not reliably more effective than the text‐based control conditions. (shrink)

It is often assumed that engaging in a one‐on‐one dialogue with a tutor is more effective than listening to a lecture or reading a text. Although earlier experiments have not always supported this hypothesis, this may be due in part to allowing the tutors to cover different content than the noninteractive instruction. In 7 experiments, we tested the interaction hypothesis under the constraint that (a) all students covered the same content during instruction, (b) the task domain was qualitative physics, (c) (...) the instruction was in natural language as opposed to mathematical or other formal languages, and (d) the instruction conformed with a widely observed pattern in human tutoring: Graesser, Person, and Magliano's 5‐step frame. In the experiments, we compared 2 kinds of human tutoring (spoken and computer mediated) with 2 kinds of natural‐language‐based computer tutoring (Why2‐Atlas and Why2‐AutoTutor) and 3 control conditions that involved studying texts. The results depended on whether the students' preparation matched the content of the instruction. When novices (students who had not taken college physics) studied content that was written for intermediates (students who had taken college physics), then tutorial dialogue was reliably more beneficial than less interactive instruction, with large effect sizes. When novices studied material written for novices or intermediates studied material written for intermediates, then tutorial dialogue was not reliably more effective than the text‐based control conditions. (shrink)

Due to the potential ethical and psychological implications of screening, and especially inregard of screening on children without available and acceptable therapeutic measures, there is a common view that such procedures are not advisable. As part of an independent research- and bioethical case study, our aim was therefore to explore and describe bioethical issues among a representative sample of participant families (n = 17,055 children) in the ABIS (All Babies In South-east Sweden) research screening for Type 1 diabetes (IDDM).The primary (...) aim is the identification of risk factors important for the development of diabetes and other multifactorial immune-mediated diseases. Four hundred, randomly chosen, participant mothers were asked to complete a questionnaire exploring issues of information, informed consent, bio-material, confidentiality and autonomy, and of prevention/intervention. 293 completed the questionnaire, resulting in a response rate of 73.3%. The majority of questions had the form of 6-point Likert-type response scales (1–6).We found that the majority of respondents felt calm in regard of samples and written material, and also concerning the possibility of their child in the future being identified as having high risk of developing Type 1 diabetes. An important finding concerning access and control of mainly biological data was indicated, with the respondents expressing concern for potential future use. We believe our findings indicate that this kind of empirical studies can substantially contribute to our understanding of bioethical issues of medical research involving genetics. Issues, such as safeguards ensuring theethical criteria of autonomy and respect, were emphasised by our respondents. We believe theissues brought up may promote further discussion, and do suggest issues for consideration by, among others, researchers, bioethicists and Institutional Review Boards. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Religious Perspectives on Bioethics, Part 2Laura Jane Bishop (bio) and Mary Carrington Coutts (bio)This is Part Two of a two part Scope Note on Religious Perspectives on Bioethics. Part One was published in the June 1994 issue of this Journal. This Scope Note has been arranged in alphabetical order by the name of the religious tradition.Contents for Parts 1 and 2Part 1I.GeneralVI.HinduismII.African Religious TraditionsVII.IslamIII.Bahá'í FaithVIII.JainismIV.Buddhism and ConfucianismIX.JudaismV.Eastern (...) OrthodoxyPart 2I.Native American ReligiousChristian Scientist TraditionsEpiscopal/AnglicanII.ProtestantismEvangelicalGeneralJehovah's WitnessAnabaptist (Church of theLutheranBrethren, Friends SocietyMethodist/Wesleyan(Quaker), and Mennonite/NazareneAmish/Hutterite)Presbyterian/ReformedAssemblies of GodSeventh-day AdventistBaptistUnitarian UniversalistChurch of Jesus Christ of theUnited Church of Christ Latter-day SaintsIII.Roman CatholicismChristian Church (Disciples of Christ)[End Page 357]IntroductionThe many religions of the world bring diverse, and occasionally divergent attitudes to bioethical issues. These beliefs may guide patients and health care professionals as they seek or provide health care. In an attempt to facilitate understanding of and access to information about these beliefs in our pluralistic and global society, this Scope Note identifies literature by the world's major religious groups on topics relating to bioethics.Topics covered by this Scope Note include general attitudes to health and health care, the physician-patient relationship, treatment refusal, abortion, contraception, sterilization, reproductive technologies, genetics, mental health, human experimentation, organ transplantation and donation, death, euthanasia, suicide, and prolongation of life. Material was not available on all of these topics for each religion.The literature gathered here represents only a small portion of the available writing on religion and medicine for these faith traditions in the United States, and is limited to that which comments explicitly on bioethical issues. Some faiths have a rich tradition of writing on bioethics, for others the literature is more limited. Variation in coverage is not intended to indicate the relative importance of a faith but reflects accessibility and space constraints. Individuals interested in obtaining additional information are encouraged to contact the National Reference Center for Bioethics Literature.It is important to remember that doctrinal and theological differences exist even within the same denomination and that views of individual patients, family members, and health care providers should be sought.Native North American ShamanismAvery, Charlene. Native American Medicine: Traditional Healing. Journal of the American Medical Association 265 (17): 2271, 2273, 1 May 1991. A brief description of the general principles of Southwestern Native American religions is provided. Most tribes believe that health and religious well-being are interconnected.Day, Thomas W. Cross-Cultural Medicine at Home. Minnesota Medicine 75 (3): 15-17, March 1992. The Ojibwe tribe's view of health incorporates spiritual health and emphasizes a holistic approach to health care that encompasses a harmonious balance between the individual, community, and nature, as well as between body, mind, and spirit.Hirschfelder, Arlene B., and Molin, Paulette. The Encyclopedia of Native American Religions. New York: Facts on File, 1992. 367 p. A survey of Native American religions is provided, including tribal histories, descriptions of religious ceremonies, and biographical sketches.Hultkrantz, Åke. Health, Religion, and Medicine in Native North American Traditions. In Healing [End Page 358] and Restoring: Health and Medicine in the World's Religious Traditions, ed. Lawrence Sullivan, pp. 327-58. New York: Macmillan, 1989. Hultkrantz summarizes the Native American attitude toward medicine and health care, explaining that belief in the supernatural and its powers is one of the most important tenets of life. Ailing persons are aided by those who have been trained to act as mediators between the sick individual and the supernatural powers. Attitudes toward health and disease, and the role of the medicine man are demonstrated through the use of examples taken from many tribes.Hultkrantz, Åke. Shamanic Healing and Ritual Drama: Health and Medicine in Native North American Religious Traditions. New York: Crossroad, 1992. 197 p. Hultkrantz surveys the varied traditions of Native North Americans and their outlook on medical care, health, and religion, and emphasizes that Native American medical beliefs... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Religious Perspectives on Bioethics, Part ILaura Jane Bishop (bio) and Mary Carrington Coutts (bio)This is Part One of a two part Scope Note on Religious Perspectives on Bioethics. Part Two will be published in the December 1994 issue of this Journal. This Scope Note has been organized in alphabetical order by the name of the religious tradition.Contents for Parts 1 and 2Part 1Part 2I.GeneralI.Native AmericanII.African Religious TraditionsReligious (...) TraditionsIII.Bahá'í FaithII.Protestantism—willIV.Buddhism and Confucianisminclude a general sectionV.Eastern Orthodoxyand sections focused onVI.Hinduismspecific denominations.VII.IslamIII.Roman CatholicismVIII.JainismIX.JudaismIntroductionThe many religions of the world bring diverse, and occasionally divergent, attitudes to bioethical issues. These beliefs may guide patients and health care professionals as they seek or provide health care. In an attempt to facilitate understanding of and access to information about these beliefs in our pluralistic and global society, this Scope Note identifies literature by the world's major religious groups on topics relating to bioethics.Topics covered by this Scope Note include general attitudes to health and [End Page 155] health care, the physician-patient relationship, treatment refusal, abortion, contraception, sterilization, reproductive technologies, genetics, mental health, human experimentation, organ transplantation and donation, death, euthanasia, suicide, and prolongation of life. Material was not available on all of these topics for each religion.The literature gathered here represents only a small portion of the available writing on religion and medicine, and is limited to that which comments explicitly on bioethical issues. Some faiths have a rich tradition of writing in bioethics; for others the literature is more limited. Variation in coverage is not intended to indicate the relative importance of a faith, but reflects accessibility and space constraints. Individuals interested in obtaining additional information are encouraged to contact the National Reference Center for Bioethics Literature.Specific citations about a region or country were chosen because of the predominance of a religious tradition within the population. In all cases, variation in spelling represents author usage. This Scope Note treats only the literature published in English, and every attempt has been made to identify English language sources for these faiths.It is important to remember that doctrinal and theological differences exist even within the same denomination and that views of individual patients, family members, and health care providers should be sought.Dictionaries and EncyclopediasMelton, J. Gordon, ed. Encyclopedia of American Religions. Fourth edition. Detroit: Gale Research, 1993. 1217 p. Basic information about the history, sacred texts, membership, educational facilities, publications, and North American addresses are provided for 1,730 churches, denominations, sects, and cults. Bibliographies for many faiths supplement this extensive resource.Reich, Warren T., ed. Encyclopedia of Bioethics. New York: Free Press, Macmillan, 1978. 4 volumes. Articles on all the major religions as they relate to bioethics are included in this highly-regarded encyclopedia. In addition, many of the topical essays feature a section on the views of various faiths on the topic under discussion. For the best use of the Encyclopedia, see the subject index in volume 4. (Note: a revised, second edition is due to be published by Macmillan in late 1994.)GeneralAmerican Psychiatric Association. Committee on Religion and Psychiatry. Guidelines Regarding Possible Conflict Between Psychiatrists' Religious Commitment and Psychiatric Practice. American Journal of Psychiatry 147 (4): 542, April 1990. The American Psychiatric Association recommends that psychiatrists respect their patients' religious beliefs and that they not impose their own [End Page 156] beliefs on their patients.Bankowski, Z., and Bryant, J. H. Health Policy, Ethics and Human Values: Proceedings of the XVIIth CIOMS Round Table Conference, Athens Greece. Geneva: Council for International Organizations of Medical Sciences, 1985. 336 p. Many sections of this volume address issues where religion impacts health policymaking. Africa, the Middle East, Europe, Latin America, and Asia are highlighted for the varied ways in which their religions and cultures are integrated into the provision of health care.Batchelor, Edward, ed. Abortion: The Moral Issues. New York: Pilgrim Press, 1982. 246 p. Batchelor compiles a collection of essays by experts on religious ethics as they relate to abortion. Includes... (shrink)

If bioethics seeks to affect what people do and don't do as they respond to the practical issues that confront them, then it is useful to take seriously people's sense of rightness. Rightness emerges from the fabric of a life—including the economy of its geography, the events of its times, its popular culture—to be what the sociologist Pierre Bourdieu calls a predisposition. It is the product of a way of life and presupposes continuing to live that way. Rightness is (...) local and communal, holding in relationship those who share the same predisposing sense of how to experience. Rightness is an embodied way of evaluating what is known to matter and choosing among possible responses. Bioethics spends considerable time on what people should do and on the arguments that support recommended actions. It might spend more time on what shapes people's sense of the rightness of what they feel called to do. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Principles and Theory in BioethicsPat Milmoe McCarrick (bio)The following citations were selected from BIOETHICSLINE, the online database prepared at the Kennedy Institute of Ethics for the National Library of Medicine's MEDLARS system. Searching the keywords autonomy, beneficence, casuistry, justice, and virtues, as well as the text word principlism produced more than 400 citations. Only the citations concerned with theory and principle in the practice of bioethics are included (...) here—e.g., works about justice in resource allocation have been deleted.Arkes, Hadley V. When Bungling Practice Is Joined to Absurd Theory: Doctors, Philosophers, and the Right to Die. In Set No Limits: A Rebuttal to Daniel Callahan's Proposal to Limit Health Care for the Elderly, ed. Robert L. Barry and Gerard V. Bradley, pp. 31-44. Urbana: University of Illinois Press, 1991.Arnason, Vilhjalmur. Towards Authentic Conversations: Authenticity in the Patient-Professional Relationship. Theoretical Medicine 15 (3): 227-42, September 1994.Arras, John D. Getting Down to Cases: The Revival of Casuistry in Bioethics. Journal of Medicine and Philosophy 16 (1): 29-51, February 1991.Arras, John D. Principles and Particularity: The Role of Cases in Bioethics. Indiana Law Journal 69 (4): 983-1014, Fall 1994.Beauchamp, Tom L. Principles and Other Emerging Paradigms in Bioethics. Indiana Law Journal 69 (4): 955-71, Fall 1994.Beauchamp, Tom L. The Principles Approach. Hastings Center Report 23 (6): S9, November-December 1993.Beauchamp, Tom L., and Childress, [End Page 279] James F. Principles of Biomedical Ethics. 4th ed. New York: Oxford University Press, 1994. 752 p.Beauchamp, Tom L., and Walters, LeRoy. Ethical Theory and Bioethics. In their Contemporary Issues in Bioethics. 4th ed., pp. 1-38. Belmont, CA: Wadsworth, 1994.Beldecos, Athena, and Arnold, Robert M. Gathering Information and Casuistic Analysis. [Commentary]. Journal of Clinical Ethics 4 (3): 241-45, Fall 1993.Bole, Thomas J. The Rhetoric of Rights and Justice in Health Care. In Rights to Health Care, ed. Thomas J. Bole and William B. Bondeson, pp. 1-19. Boston: Kluwer Academic, 1991.Broome, John. Fairness Versus Doing the Most Good. [Commentary]. Hastings Center Report 24 (4): 36-39, July-August 1994.Campbell, Courtney S. Gifts and Caring Duties in Medicine. In Duties to Others, ed. Courtney S. Campbell and B. Andrew Lustig, pp. 181-97. Boston: Kluwer Academic, 1994.Carson, Ronald A.; Callahan, Sidney; Ross, Judith Wilson; and May, William F. Spirit, Emotion, and Meaning: The Many Voices of Bioethics. Hastings Center Report 24 (3): 26-27, May-June 1994.Charlesworth, Max. Bioethics in a Liberal Society. New York: Cambridge University Press, 1993. 172 p.Cherbas, Peter. Paradigms and Our Shrinking Bioethics. Indiana Law Journal 69 (4): 1105-13, Fall 1994.Childress, James F. Ethical Theories, Principles, and Casuistry in Bioethics: An Interpretation and Defense of Principlism. In Religious Methods and Resources in Bioethics, ed. Paul F. Camenisch, pp. 181-201. Boston: Kluwer Academic, 1994.Childress, James F., and Fletcher, John C. Individualism and Community: The Contested Terrain of Respect for Autonomy. Hastings Center Report 24 (3): 34-35, May-June 1994.Clouser, K. Danner, and Gert, Bernard. A Critique of Principlism. Journal of Medicine and Philosophy 15 (2): 219-36, April 1990.Devettere, Raymond J. Clinical Ethics and Happiness. Journal of Medicine and Philosophy 18 (1): 71-89, February 1993.DeGrazia, David. Moving Forward in Bioethical Theory: Theories, Cases, and Specified Principlism. Journal of Medicine and Philosophy 17 (5): 511-39, October 1992.Donnelly, William J. From Principles to Principals: The New Direction in Medical Ethics. [Commentary]. Theoretical Medicine 15 (2): 141-48, June 1994.Downie, Robin. Health Care Ethics and Casuistry. [Editorial]. Journal of Medical Ethics 18 (2): 61-62, 66, June 1992. [End Page 280]DuBose, Edwin R.; Hamel, Ronald P.; and O'Connell, Laurence J., eds. A Matter of Principles? Ferment in U.S. Bioethics. Valley Forge, PA: Trinity Press International, 1994. 381 p.Fox, Renée C. The Entry of U.S. Bioethics into the 1990s: A Sociological Analysis, pp. 21-71.Gudorf, Christine E. A Feminist Critique of Biomedical Principlism, pp.164-81.Campbell, Courtney S. Principlism and Religion: The Law and the Prophets, pp. 182-208.Charon, Rita. Narrative Contributions to Medical Ethics: Recognition, Formulation, Interpretation, and Validation... (shrink)

Book reviewed in this article: Health Care Politics, Policy, and Distributive Justice: The Ironic Triumph. By Robert P. Rhodes.

The arrival of the Covid‐19 pandemic in Pakistan necessitated that the Centre of Biomedical Ethics and Culture in Karachi realign its activities to changing realities in the country. As Pakistan's only bioethics center, and with no guidelines available for allocation of scarce medical resources, CBEC developed “Guidelines for Ethical Healthcare Decision‐Making in Pakistan” with input from medical and civil society stakeholders. The CBEC blog connected to the center's bioethics programs for students from Pakistan and Kenya shifted (...) to Covid‐related issues specific to the context of existing social and political realities within these countries. As part of its outreach activities, CBEC initiated a popular Facebook series, #HumansofCovid, as an experience‐sharing platform for health care professionals and members of the public. Narratives received vary from those by frustrated physicians under quarantine to those concerning street vendors left jobless and a transsexual person in whose opinion “social distancing” is not a new phenomenon for their communities. (shrink)

Emotion is at the centre of our personal and social lives. To love or to hate, to be frightened or grateful is not just a matter of how we feel on the inside: our emotional responses direct our thoughts and actions, unleash our imaginations, and structure our relationships with others. Yet the role of emotion in human life has long been disputed. Is emotion reason?s friend or its foe? From where do the emotions really arise? Why do we need them (...) at all? In this accessible and carefully argued introduction, Carolyn Price focuses on some central questions about the nature and function of emotion. She explores the ways in which emotion contrasts with belief and considers how our emotional responses relate to our values, our likes and our needs. And she investigates some of the different ways in which emotional responses can be judged as fitting or misplaced, rational or irrational, authentic or inauthentic, sentimental or profound. Throughout, she develops a particular view of emotion as a complex and diverse phenomenon, which reflects both our common evolutionary past and our different cultural and personal histories. Engagingly written with lots of examples to illuminate our understanding, this book provides the ideal introduction to the topic for students and scholars and anyone interested in delving further into the intricate web of human emotion. (shrink)

This article is the lead piece in a special report that presents the results of a bioethical investigation into chimeric research, which involves the insertion of human cells into nonhuman animals and nonhuman animal embryos, including into their brains. Rapid scientific developments in this field may advance knowledge and could lead to new therapies for humans. They also reveal the conceptual, ethical, and procedural limitations of existing ethics guidance for human‐nonhuman chimeric research. Led by bioethics researchers working closely with (...) an interdisciplinary work group, the investigation focused on generating conceptual clarity and identifying improvements to governance approaches, with the goal of helping scholars, funders, scientists, institutional leaders, and oversight bodies (embryonic stem cell research oversight [ESCRO] committees and institutional animal care and use committees [IACUCs]) deliver principled and trustworthy oversight of this area of science. The article, which focuses on human‐nonhuman animal chimeric research that is stem cell based, identifies key ethical issues in and offers ten recommendations regarding the ethics and oversight of this research. Turning from bioethics’ previous focus on human‐centered questions about the ethics of “humanization” and this research's potential impact on concepts like human dignity, this article emphasizes the importance of nonhuman animal welfare concerns in chimeric research and argues for less‐siloed governance and oversight and more‐comprehensive public communication. (shrink)

Jerry Fodor, by common agreement, is one of the world’s leading philosophers. At the forefront of the cognitive revolution since the 1960s, his work has determined much of the research agenda in the philosophy of mind and the philosophy of psychology for well over 40 years. This special issue dedicated to his work is intended both as a tribute to Fodor and as a contribution to the fruitful debates that his work has generated. One philosophical thesis that has dominated Fodor’s (...) work since the 1960s is realism about the mental. Are there really mental states, events and processes? From his first book, Psychological Explanation (1968), onwards, Fodor has always answered this question with a resolute yes. From his early rejection of Wittgensteinian and behaviourist conceptions of the mind, to his later disputes with philosophers of mind of the elminativist ilk, he has always been opposed to views that try to explain away mental phenomena. On his view, there are minds, and minds can change the world. (shrink)

Ontologies are being developed throughout the biomedical sciences to address standardization, integration, classification and reasoning needs against the background of an increasingly data-driven research paradigm. In particular, ontologies facilitate the translation of basic research into benefits for the patient by making research results more discoverable and by facilitating knowledge transfer across disciplinary boundaries. Addressing and adequately treating mental illness is one of our most pressing public health challenges. Primary research across multiple disciplines such as psychology, psychiatry, biology, neuroscience and pharmacology (...) needs to be integrated in order to promote a more comprehensive understanding of underlying processes and mechanisms, and this need for integration only becomes more pressing with our increase in understanding of differences among individuals and populations at the molecular level concerning susceptibility to specific illnesses. Substance addiction is a particularly relevant public health challenge in the developed world, affecting a substantial percentage of the population, often co-morbid with other illnesses such as mood disorders. Currently, however, there is no straightforward automated method to combine data of relevance to the study of substance addiction across multiple disciplines and populations. In this contribution, we describe a framework of interlinked, interoperable bio-ontologies for the annotation of primary research data relating to substance addiction, and discuss how this framework enables easy integration of results across disciplinary boundaries. We describe entities and relationships relevant for the description of addiction within the Mental Functioning Ontology, Chemical Entities of Biological Interest Ontology, Protein Ontology, Gene Ontology and the Neuroscience Information Framework ontologies. (shrink)