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)

"The Bush administration and Congress are in concert on the goal of developing a fleet of unmanned aircraft that can reduce both defense costs and aircrew losses in combat by taking on at least the most dangerous combat missions. Unmanned combat aerial vehicles (UCAVs) will be neither inexpensive enough to be readily expendable nor-- at least in early development-- capable of performing every combat mission alongside or in lieu of manned sorties. Yet the tremendous potential of such systems is widely (...) recognized, and allies as well as potential adversaries are moving quickly to mount their own research and development programs. The United States is committed to fielding UCAV capabilities by 2010, principally for the missions of suppression of enemy air defense and deep strike, which are among the highest risk tasks for the Air Force and naval aviation."--Overview. (shrink)

Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their underlying assumptions (...) may be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Veterans Affairs National Center for Clinical EthicsJames L. Bernat (bio)The veterans health administration is the largest health care system in the United States and, indeed, is larger that the health care system of many foreign countries. In February 1991 the Department of Veterans Affairs (V.A.) in Washington, D.C. awarded a contract to the clinical ethics group at the Veterans Affairs Medical (...) Center in White River Junction, Vermont to establish the V.A. National Center for Clinical Ethics. In this article I describe the organizational context, mission, operation, and future direction of the Center, which William A. Nelson, Ph.D., and I co-direct.The Veterans Health AdministrationThe Department of Veterans Affairs operates 171 hospitals providing services ranging from primary, secondary, and tertiary medical care to psychiatric hospitals, rehabilitation centers, and nursing homes. The V.A. also provides outpatient services at all hospitals and at dozens of free-standing outpatent clinics. V.A. medical centers employ over 14,000 physicians and serve approximately 4.5 million veteran patients (Hollingsworth and Bondy 1990; Mirvis 1990).The V.A. serves an important educational function, providing training sites for medical students, postgraduate physicians, and trainees in other health-related fields. Approximately 78 percent of V.A. medical centers are affiliated with medical schools. Over one-third of all American medical students and over 40 percent of interns and residents spend a portion of their training in V.A. medical centers. More than 100,000 students in all health-related fields train in V.A. facilities annually (Hollingsworth and Bondy 1990).Research is another mission of the V.A. Many academic physicians and scientists derive their research and salary funding from V.A contracts and awards. The V.A. Research Career Development Program provides the means for many medical school faculty members to achieve successful careers as scientists and clinical investigators. Although research accounts for only slightly more than 1 percent of the V.A. medical budget, two V.A. researchers have been awarded the Nobel Prize (Hollingsworth and Bondy 1990). [End Page 385]In comparison to other medical care settings, the average V.A. patient is likely to be older, poorer, male, less well-educated, more chronically ill, and more expensive to care for. Many patients first patronize the V.A. system after they have been bankrupted by the costs of a major illness. Unlike young, healthy patients ideally favored by health maintenance organizations, these patients immediately require large expenditures for hospitalizations, medications, and other treatments. Additional burdens have been placed on V.A. facilities by a record of chronic federal underfunding over the past decade, despite expanded patient censuses at every facility.Bioethical issues arise in V.A. facilities with great frequency for several reasons. Older and poorer patients are often sicker, have fewer home-support resources, and have completed fewer advance directives for health care. Chronic operational underfunding requires explicit health care rationing systemwide. Academic physicians within the V.A. system have multiple professional duties that have the potential for conflict. Although their primary duty is to their patients, they also must serve the federal government and their medical school academic supervisors. The practice of medical care rationing pits the physician's professional duty to his patient against his duty to the system (Mirvis 1990).The V.A. has responded to these bioethical demands with several initiatives. Hospital ethics advisory committees have been developed in nearly every V.A. medical center. The V.A. National Bioethics Committee has been empaneled to encourage uniform policies across the V.A. system concerning bioethical issues. Most recently, funds were provided for the V.A. National Center for Clinical Ethics.Functions of the National Center for Clinical Ethics (NCCE)The NCCE has a fourfold mission: 1) to enhance the quality of clinical ethics programs at all 171 V.A. medical centers nationwide; 2) to staff the V.A. National Bioethics Committee; 3) to assist administrators and planners in the V.A. Central Office on policy development concerning bioethical issues; and 4) to study, organize, and coordinate clinical, educational, and research bioethics programs throughout the system.Enhancing the quality of clinical ethics programs at V.A. medical centers is largely an... (shrink)

Genomics is increasingly becoming an integral component of health research and clinical care. The perceived difficulties associated with genetic research involving Aboriginal and Torres Strait Islander people mean that they have largely been excluded as research participants. This limits the applicability of research findings for Aboriginal and Torres Strait Islander patients. Emergent use of genomic technologies and personalised medicine therefore risk contributing to an increase in existing health disparities unless urgent action is taken. (...) To allow the potential benefits of genomics to be more equitably distributed, and minimise potential harms, we recommend five actions: ensure diversity of participants by implementing appropriate protocols at the study design stage; target diseases that disproportionately affect disadvantaged groups; prioritise capacity building to promote Indigenous leadership across research professions; develop resources for consenting patients or participants from different cultural and linguistic backgrounds; and integrate awareness of issues relating to Indigenous people into the governance structures, formal reviews, data collection protocols and analytical pipelines of health services and research projects. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.1 (2004) 47-54 [Access article in PDF] Ethical Guidelines for Human Embryonic Stem Cell Research*(A Recommended Manuscript) Adopted on 16 October 2001Revised on 20 August 2002 Ethics Committee of the Chinese National Human Genome Center at Shanghai, Shanghai 201203 Human embryonic stem cell (ES) research is a great project in the frontier of biomedical science for the twenty-first century. Be- (...) cause the research involves the use of human embryos, it triggers serious debate on ethical issues. Opponents consider the embryo to be an early form of human life that should be respected and not destroyed. However, the majority of scientists support embryonic stem cell research, believing that it offers good prospects for the treatment of diseases that have remained incurable until now and so will benefit humankind. The Ethics Committee of the Department of Ethical, Legal, and Social Implications of the Chinese National Human Genome Center at Shanghai seriously discussed the ethical debate initiated by embryonic stem cell research. We concluded that we should support the scientists of our country in actively carrying out human embryonic stem cell research for the noble cause of "medicine being a beneficent art." For the healthy and orderly development of human embryonic stem cell research in our country, we put forward the following recommended Ethical Guidelines for Human Embryonic Stem Cell Research as a reference for leaders, administrative departments, and related scientists. Preface Article 1. Human embryonic stem cells are the primitive cells that play the main role in the growth and development of a human body. These [End Page 47] primitive cells have the potential for infinite proliferation, self-renewal, and multi-directional differentiation. If scientists can discover the mechanism of differentiation of human embryonic stem cells, it will be possible to induce differentiation of human embryonic stem cells to form various types of human cells for clinical cell therapy. If human embryonic stem cell research can be integrated with modern biomedical engineering techniques, it also will be possible to make repair and replacement of human tissues and organs a reality. Article 2. There are two ways to classify human embryonic stem cells. One way is to classify them according to their potential for differentiation. There could be three kinds of stem cells: totipotent stem cells, pluripotent stem cells, and unipotent stem cells.A totipotent stem cell has the potential to develop into a whole individual. It can differentiate into the more than 200 cell types in the whole body, construct any tissue or organ of the body, and finally develop into a whole individual. The fertilized egg and the cleavage cells at the very early stage of embryonic development are totipotent stem cells.A pluripotent stem cell has the potential to differentiate into many cell types derived from the three embryonic layers. However, it has lost the capacity to develop into a complete organism.A unipotent stem cell is derived from the further differentiation of the pluripotent stem cell. It can differentiate only into one cell type such as a hematopoietic stem cell, neural stem cell, and others.The other way is to classify human stem cells according to their source. There could be two kinds of human stem cells: embryonic stem cells and tissue stem cells (also called adult stem cells). The former involves experimentation with embryos, which has serious ethical implications. Ethical issues associated with the latter are mainly expressed in the various opinions regarding the allocation of health resources. Article 3. Human embryonic stem cells are the group of cells called the blastocyst inner cell mass during the early stage of embryonic development. They are the main source of totipotent stem cells, and hence the focal and hot point in stem cell research. Studies on the clinical application of embryonic stem cells probably will involve use of the somatic cell nucleus transfer (SCNT) technique, which destroys the early human embryo. At present, the ethical and moral debate is very serious in human embryonic stem cell research regarding whether the research will develop... (shrink)

This article is guided by principles and practices of bioethics and public health ethics focused on health care reform within the context of promoting Optimal Health. The Tuskegee University National Center for Bioethics in Research and Health Care is moving beyond the traditions of bioethics to incorporate public health ethics and Optimal Health. It is imperative to remember the legacy of the ill-fated research entitled Tuskegee (...) Study of Untreated Syphilis in the Negro Male. Human participant research and health care must be connected to principles of bioethics and public health ethics if the Affordable Care Act is expected to positively impact on the health of people living in the United States. Optimal Health describes a strategy to achieve individual and population health. Health care reform offers an opportunity to shift from the traditional pathology focus of managing diseases to target disease prevention and health promotion with a new set of tools. Transformational change is possible if the lessons learned from the U.S. Public Health Service Syphilis Study at Tuskegee are considered and strategies in bioethics and public heath ethics are employed. (shrink)

Background The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. Methods The GFBR is (...) an annual meeting organized by the World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC. The forum aims to bring together ethicists, researchers, policymakers, research ethics committee members and other actors to engage with challenges and opportunities specifically related to research ethics. In 2022 the focus of the GFBR was “Ethics of AI in Global Health Research”. The forum consisted of 6 case study presentations, 16 governance presentations, and a series of small group and large group discussions. A total of 87 participants attended the forum from 31 countries around the world, representing disciplines of bioethics, AI, health policy, health professional practice, research funding, and bioinformatics. In this paper, we highlight central insights arising from GFBR 2022. Results We describe the significance of four thematic insights arising from the forum: (1) Appropriateness of building AI, (2) Transferability of AI systems, (3) Accountability for AI decision-making and outcomes, and (4) Individual consent. We then describe eight recommendations for governance leaders to enhance the ethical governance of AI in global health research, addressing issues such as AI impact assessments, environmental values, and fair partnerships. Conclusions The 2022 Global Forum on Bioethics in Research illustrated several innovations in ethical governance of AI for global health research, as well as several areas in need of urgent attention internationally. This summary is intended to inform international and domestic efforts to strengthen research ethics and support the evolution of governance leadership to meet the demands of AI in global health research. (shrink)

Fifty years after the death of Edmund Husserl, the main founder of the phenomenological current of thought, we present to the public a four book collection showing in an unprecedented way how Husserl's aspiration to inspire the entire universe of knowledge and scholarship has now been realized. These volumes display for the first time the astounding expansion of phenomenological philosophy throughout the world and the enormous wealth and variety of ideas, insights, and approaches it has inspired. The basic commitment to (...) phenomenological concerns found in all this variety makes this collection a most signifi cant historical document. This second volume of the collection bears witness to a deliberate shift of attention from the earlier to the later phase of Husserl's reflections. We see how his issues - intersubjectivity, ethics, human encounter, the societal world, empathy, the sphere of the self, and the surpassing of dichotomies (bodylpsyche, etc.) - are now at the center of attention in the human sciences. Among the authors are H. Tellenbach, A. Rigobello, C. Balzer, C. Bjurvill, V. Molchanov, E. Syristova, O. Balaban, R. Boehm, M. Sancipriano, O. M. Anwar, Y. Okamoto, B. Holyst, T. Sodeika, and M. De Negri. The studies were gathered at the programs held by The World Institute for Advanced Phenomenological Research and Learning in the commemorative year 1988/1989, chiefly at the First World Congress of Phenomenology at Santiago de Compos tela, Spain, with the aim of assessing the current state of phenomenology. A-T. T. (shrink)

An incisive examination of bioethics and American healthcare, and their profound affects on American culture over the last sixty years, from two eminent scholars. An eye-opening look at the inevitable moral choices that come along with tremendous medical progress, Everybody Wants to Go to Heaven but Nobody Wants to Die is a primer for all Americans to talk more honestly about health care. Beginning in the 1950s when doctors still paid house calls but regularly withheld the truth (...) from their patients, Amy Gutmann and Jonathan D. Moreno explore an unprecedented revolution in health care and explain the problem with America’s wanting everything that medical science has to offer without debating its merits and its limits. The result: Americans today pay far more for health care while having among the lowest life expectancies and highest infant mortality of any affluent nation. Gutmann and Moreno—“incisive, influential, and pragmatic thinkers” (Arthur Caplan)—demonstrate that the stakes have never been higher for prolonging and improving life. From health care reform and death-with-dignity to child vaccinations and gene editing, they explain how bioethics came to dominate the national spotlight, leading and responding to a revolution in doctor-patient relations, a burgeoning world of organ transplants, and new reproductive technologies that benefit millions but create a host of legal and ethical challenges. With striking examples, the authors show how breakthroughs in cancer research, infectious disease, and drug development provide Americans with exciting new alternatives, yet often painful choices. They address head-on the most fundamental challenges in American health care: Why do we pay so much for health care while still lacking universal coverage? How can medical studies adequately protect individuals who volunteer for them? What’s fair when it comes to allocating organs for transplants in truly life-and-death situations? A lucid and provocative blend of history and public policy, this urgent work exposes the American paradox of wanting to have it all without paying the price. (shrink)

Volume 19, Issue 6, June 2019, Page 4-6.

Hastings Center Report, Volume 52, Issue S1, Page S83-S88, March‐April 2022.

This article examines bioethics in Tanzania, particularly in relation to the HIV/AIDS epidemic for the following reasons: First, not only is HIV/AIDS the most alarming health problem in most parts of Africa, but the complexity of issues involved in medical and research ethics clearly illustrates the various levels of problems that bioethics—more precisely, both professional medical ethics and research ethics—faces in a poor, developing country. The article defends uniformity in the general, international bioethical guidelines but (...) calls for wider discussion in their applicability in different economic and social conditions by claiming that in the present debates the issues of distributive justice, culture, and individual professional judgment have been tangled together in a manner that tends to justify double standards in practice. To avoid this confusion there is a need to find a more coherent approach to bioethics that brings together the normative requirements set by international guidelines, national policy planning, social ethics, and professional medical ethics. a. (shrink)

Numerous issues confront women's healthcare today, among them the medicalization of women's bodies, cosmetic genital surgery, violence against women, HIV, perinatal mental health disorders. This volume uniquely explores such difficult topics and others at the intersection of clinical practice, policy, and bioethics in women's health care through a feminist ethics lens. With in-depth discussions of issues in women's reproductive health, it also broadens scholarship by responding to a wider array of ethical challenges that many women (...) experience in accessing health care. Contributions touch on many themes previously tackled by feminist ethics, but in new, contemporary ways. Some chapters expand into new fields in the bioethics literature, such as the ethical issues related to the care of Indigenous women, uninsured refugees and immigrants, women engaged in sex work, and those with HIV at different life stages and perinatal mental health disorders. Authors seek to connect theory and practice with users of the health system by including women's voices in their research. Bringing to bear their experience in active clinical practice in medicine, nursing, and ethics, the authors contemplate new conceptual approaches to important issues in women's healthcare, and make ethical practice recommendations for those grappling with these issues. Topical and up-to-date, this book provides a valuable resource for physicians, nurses, clinical ethicists, and researchers working in some of the most critical areas of women's health and applied ethics today. (shrink)

The first meeting of the Global Forum for Bioethics in Research was initiated by the Fogarty International Centre of the National Institutes of Health and sponsored by the World Health Organisation, the Pan American Health Organisation and the NIH. Held in Bethesda on November 7-10,1999, the intent was to bring together individuals involved in medical research in low- and middle-income nations to share views with each other and with organisations that support clinical (...) class='Hi'>research. Approximately 120 persons from 34 countries participated, including individuals from developing countries, pharmaceutical organisations, and communities where medical research is under way.The participants addressed the partnerships required between research sponsors and investigators involved in clinical trials in developing countries and the long-term needs for international multicentred training programs. (shrink)

The first meeting of the Global Forum for Bioethics in Research was initiated by the Fogarty International Centre of the National Institutes of Health and sponsored by the World Health Organisation, the Pan American Health Organisation and the NIH. Held in Bethesda on November 7-10,1999, the intent was to bring together individuals involved in medical research in low- and middle-income nations to share views with each other and with organisations that support clinical (...) class='Hi'>research. Approximately 120 persons from 34 countries participated, including individuals from developing countries, pharmaceutical organisations, and communities where medical research is under way.The participants addressed the partnerships required between research sponsors and investigators involved in clinical trials in developing countries and the long-term needs for international multicentred training programs. (shrink)

ABSTRACT In recent years there has been intense debate regarding the level of medical care provided to ‘standard care’ control groups in clinical trials in developing countries, particularly when the research sponsors come from wealthier countries. The debate revolves around the issue of how to define a standard of medical care in a country in which many people are not receiving the best methods of medical care available in other settings. In this paper, we argue (...) that additional dimensions of the standard of care have been hitherto neglected, namely, the structure and efficiency of the national health system. The health system affects locally available medical care in two important ways: first, the system may be structured to provide different levels of care at different sites with referral mechanisms to direct patients to the appropriate level of care. Second, inefficiencies in this system may influence what care is available in a particular locale. As a result of these two factors locally available care cannot be equated with a national ‘standard’. A reasonable approach is to define the national standard of care as the level of care that ought to be delivered under conditions of appropriate and efficient referral in a national system. This standard is the minimum level of care that ought to be provided to a control group. There may be additional moral arguments for higher levels of care in some circumstances. This health system analysis may be helpful to researchers and ethics committees in designing and reviewing research involving standard care control groups in developing country research. (shrink)

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and (...) class='Hi'>national public policy settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

The main trends of the bioethics development in Belarus have been analyzed on the basis of the materials collected by the Ethics Documentation Center (ISEU, Minsk, Belarus). A critical review of the most important publications in the field since 2000 suggests that development of bioethics in Belarus has occurred in two parallel directions distantly connected to each other: a theoretical direction and a practical one. Despite there are objective and subjective reasons for introducing bioethics in Belarus (...) as an institutionally-organized system based on liberal values such as individual rights and freedom, a range of essential problems could be identified. Non-equivalent regulation of ethical issues in health care and other fields of biomedical research has been emphasized, as well as the problem of unclear hierarchical relationships among institutions dealing with various aspects of bioethics in the country and low ethical and educational level of the social and professional groups involved in further expansion of bioethical knowledge. The contextual aspects of the development of bioethics in the country such as the consequences of the Chernobyl disaster, the prevalence of the authoritarian social morality and traditionally paternalistic nature of the relations between physicians and their patients are discussed. (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the (...) accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making.Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments.DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system.Trial RegistrationISRCTN89993391. (shrink)

ABSTRACT In recent years there has been intense debate regarding the level of medical care provided to ‘standard care’ control groups in clinical trials in developing countries, particularly when the research sponsors come from wealthier countries. The debate revolves around the issue of how to define a standard of medical care in a country in which many people are not receiving the best methods of medical care available in other settings. In this paper, we argue (...) that additional dimensions of the standard of care have been hitherto neglected, namely, the structure and efficiency of the national health system. The health system affects locally available medical care in two important ways: first, the system may be structured to provide different levels of care at different sites with referral mechanisms to direct patients to the appropriate level of care. Second, inefficiencies in this system may influence what care is available in a particular locale. As a result of these two factors locally available care cannot be equated with a national ‘standard’. A reasonable approach is to define the national standard of care as the level of care that ought to be delivered under conditions of appropriate and efficient referral in a national system. This standard is the minimum level of care that ought to be provided to a control group. There may be additional moral arguments for higher levels of care in some circumstances. This health system analysis may be helpful to researchers and ethics committees in designing and reviewing research involving standard care control groups in developing country research. (shrink)

The National Center for Biomedical Ontology is a consortium that comprises leading informaticians, biologists, clinicians, and ontologists, funded by the National Institutes of Health (NIH) Roadmap, to develop innovative technology and methods that allow scientists to record, manage, and disseminate biomedical information and knowledge in machine-processable form. The goals of the Center are (1) to help unify the divergent and isolated efforts in ontology development by promoting high quality open-source, standards-based tools to create, manage, and (...) use ontologies, (2) to create new software tools so that scientists can use ontologies to annotate and analyze biomedical data, (3) to provide a national resource for the ongoing evaluation, integration, and evolution of biomedical ontologies and associated tools and theories in the context of driving biomedical projects (DBPs), and (4) to disseminate the tools and resources of the Center and to identify, evaluate, and communicate best practices of ontology development to the biomedical community. Through the research activities within the Center, collaborations with the DBPs, and interactions with the biomedical community, our goal is to help scientists to work more effectively in the e-science paradigm, enhancing experiment design, experiment execution, data analysis, information synthesis, hypothesis generation and testing, and understand human disease. (shrink)

The emergence of Covid‐19 in the United States has revealed a critical weakness in the health care system in the United States. The majority of people in the nation receive health care via employment‐based health insurance from providers in a competitive market. However, neither employment‐based health care nor a competitive health care market can adequately provide treatment during a global pandemic. Employment‐based health care will fail to provide care (...) for a large number of people in any destabilizing economic event, including a pandemic. Competitive for‐profit health care systems distribute limited goods based on markets rather than health care needs. If a global pandemic results in unusually high demand for specific medical supplies, then these will be distributed suboptimally. The combined risk of suboptimal distribution of needed goods and a significant drop in health care access in a global pandemic indicates that the U.S. health care system has serious vulnerabilities that need to be addressed. (shrink)

Malm and colleagues (2008) consider (and reject) five arguments putatively justifying the idea that healthcare workers (HCWs) have a duty to treat (DTT) during a pandemic. We do not have sufficient...

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and (...) class='Hi'>national public policy settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

A report by the Nuffield Council on Bioethics, contrary to the Declaration of Helsinki, permits most important research initiatives in developing countries.The Ethics of Research Related to Health Care in Developing Countries by the Nuffield Council on Bioethics makes a number of innovative recommendations that depart from codes such as the Declaration of Helsinki. It recommends that standards of care might be relativised to the standard of that nation. It recommends that very good (...) reasons need to be given for not giving post-trial access to medications but recognises that there may be justifiable instances of this. It is the view of the authors that these and other recommendations of the report are sensible pieces of advice given the complexities of the developing world. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Teaching Ethics in the Health Care SettingPart II: Sample SyllabusMary Carrington Coutts (bio)The National Reference Center for Bioethics Literature at the Kennedy Institute of Ethics receives many inquiries from instructors at institutions that are just beginning to teach medical ethics. In an effort to assist those individuals, we have devised a syllabus that could be adapted for many uses. This is intended to be (...) an introductory level syllabus, perhaps one that would be appropriate for continuing staff education in a hospital or for an undergraduate college course. Of course, every instructor has his or her own style and preference for course content. This is offered merely as a place to start.Recognizing that participants bring a variety of backgrounds to a course, four possible text books and two casebooks have been selected as texts for a course in health care ethics. There are a number of other books that also could have been chosen. Some of these are listed in Scope Note 15: Basic Resources in Bioethics (published in the Kennedy Institute of Ethics Journal 1 (1): 75-90, March 1991). Other video selections are listed in Scope Note 9: Bioethics Audiovisuals: 1982-Present (1988); (available directly from the National Reference Center for Bioethics Literature). Additional recommendations for works that provide cross-cultural or international views of medical ethics appear in the supplemental readings list at the end of this syllabus.TextbooksBiomedical Ethics. Edited by Thomas A. Mappes and Jane S. Zembaty. 3rd ed. New York: McGraw-Hill, 1990, 641 pp. Cited: (M&Z). This text is well-suited for undergraduate education, with selected readings by philosophers, lawyers, and physicians. Includes 45 brief case studies to [End Page 263] illustrate various units of readings.Contemporary Issues in Bioethics. Edited by Tom L. Beauchamp and LeRoy Walters. 3rd ed. Belmont, CA: Wadsworth Pub. Co., 1989, 655 pp. Cited: (B&W). Appropriate for upper-level undergraduate or graduate education, this text includes selected readings by important philosophers, lawyers, physicians, and organizations. Includes the abridged texts of many significant court cases and government or organizational documents. Does not include case studies.Ethical Issues in Modern Medicine. Compiled by John Arras and Nancy K. Rhoden. 3rd ed. Mountain View, CA: Mayfield, 1989, 585 pp. Cited: (A&R). This text is suitable for upper-level undergraduate or graduate studies. It includes selections from well-respected lawyers, philosophers, and a few physicians. Includes excerpts from important court cases and policy documents. Provides only a few hypothetical case studies but does relate some authentic cases that are relevant to the various sections.Taking Sides: Clashing Views on Controversial Bioethical Issues. Edited by Carol Levine. 3rd ed. Guilford, CT: Dushkin Pub. Group, 1989, 370 pp. Cited: (L). A compilation of contrasting readings from the popular Hastings Center Report, this book is appropriate for undergraduate or continuing health care education. It does not include an introduction to basic biomedical ethical theory. Perhaps less systematic in its approach to bioethics than the previous textbooks, this book covers twenty topics relating to reproduction, death and dying, human and animal experimentation, and selected public policy issues. Provides pro and con arguments for each issue.CasebooksCases in Bioethics: Selections from the Hastings Center Report. Edited by Carol Levine. Rev. and updated ed. New York: St. Martin's Press, 1989, 291 pp. Cited: (HCR). This text includes cases studies taken from the well-known Hastings Center Report. Two or three commentaries usually accompany each case.Pence, Gregory E. Classic Cases in Medical Ethics: Accounts of the Cases That Have Shaped Medical Ethics, With Philosophical, Legal, and Historical Backgrounds. New York: Mc-Graw-Hill, 1990, 398 pp. Cited: (CC). This book describes a collection of famous (and infamous) cases from the history of biomedical ethics. The accounts of the cases here are more detailed than in other texts, and the style is more casual. [End Page 264]Course OutlineBelow are possible topics for discussion, listed with the relevant portions for each book. It is anticipated that only one textbook and one casebook would be chosen for a course. Whenever possible, price information for video purchase or rentals has been included, however this information is subject to change.Session 1... (shrink)

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a (...) commitment to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research (...) for a given disease can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Digital health includes applications for smartphones and smart speakers as well as more traditional ways to access health information electronically, such as through your health care provider's online web‐based patient portal. As the number of digital health offerings—such as smartphone health trackers and web‐based patient portals—grows, what benefit do ethics, or bioethics, perspectives bring to digital health product development? For starters, the field of bioethics is concerned about issues of social justice, (...) including equitable benefit and minimization and fair distribution of the burden of harms. Researchers who employ user‐centered design methods should consider what digital health applications and products would look like if issues like equity and accessibility were foregrounded throughout design and development. One group whose needs are often neglected in the design of digital health products is older adults. Many people anticipate that the digital divide among older adults will close as the current generation of tech‐savvy consumers ages up. But since technology is constantly evolving, this divide may be constantly recreated. As bioethics moves ever further into the technology era, I want it to be mindful of the creation of digital health care disparities. (shrink)

To better understand the available publications addressing ethical issues in rural health care we sought to identify the ethics literature that specifically focuses on rural America. We wanted to determine the extent to which the rural ethics literature was distributed between general commentaries, descriptive summaries of research, and original research publications. We identified 55 publications that specifically and substantively addressed rural health care ethics, published between 1966 and 2004. Only 7 (13%) of these publications (...) were original research articles while (12) 22% were descriptive summaries of research and 36 (65%) were general commentaries. The majority of publications examined (55%) were clinically focused while 27% addressed organizational ethics and 18% addressed ethical ramifications of rural health care policy at a national or community level. Our findings indicate that there are a limited number of publications focusing on rural health care ethics, suggesting a need for scholars and researchers to more rigorously address rural ethics issues. (shrink)

Who should have access to assisted reproductive technologies? Which one of many seriously ill patients should be offered the next available transplant organ? When may a surrogate decision maker decide to withdraw life-prolonging measures from an unconscious patient? Questions like these feature prominently in the field of health care ethics and in the education of health care professionals. This book provides a concise introduction to the major concepts, principles and issues in health care ethics, (...) using case studies throughout to illustrate and analyse challenging ethical issues in contemporary health care. Topics range widely, from confidentiality and truthfulness to end-of-life care and research on human subjects. Ethics and Health Care will be a vital resource for students of applied ethics, bioethics, professional ethics, health law and medical sociology, as well as students of medicine, nursing and other health care professions. (shrink)

BackgroundAs hospitals have grown more complex, the ethical concerns they confront have grown correspondingly complicated. Many hospitals have consequently developed health care ethics programs (HCEPs) that include far more than ethics consultation services alone. Yet systematic research on these programs is lacking.MethodsBased on a national, cross-sectional survey of a stratified sample of 600 US hospitals, we report on the prevalence, scope, activities, staffing, workload, financial compensation, and greatest challenges facing HCEPs.ResultsAmong 372 hospitals whose informants responded to (...) an online survey, 97% of hospitals have HCEPs. Their scope includes clinical ethics functions in virtually all hospitals, but includes other functions in far fewer hospitals: ethical leadership (35.7%), regulatory compliance (29.0%), business ethics (26.2%), and research ethics (12.6%). HCEPs are responsible for providing ongoing ethics education to various target audiences including all staff (77.0%), nurses (59.9%), staff physicians (49.0%), hospital leadership (44.2%), medical residents (20.3%) and the community/general public (18.4%). HCEPs staff are most commonly involved in policy work through review of existing policies but are less often involved in development of new policies. HCEPs have an ethics representative in executive leadership in 80.5% of hospitals, have representation on other hospital committees in 40.7%, are actively engaged in community outreach in 22.6%, and lead large-scale ethics quality improvement initiatives in 17.7%. In general, major teaching hospitals and urban hospitals have the most highly integrated ethics programs with the broadest scope and greatest number of activities. Larger hospitals, academically affiliated hospitals, and urban hospitals have significantly more individuals performing HCEP work and significantly more individuals receiving financial compensation specifically for that work. Overall, the most common greatest challenge facing HCEPs is resource shortages, whereas underutilization is the most common greatest challenge for hospitals with fewer than 100 beds. Respondents’ strategies for managing challenges include staff training and additional funds.ConclusionsWhile this study must be cautiously interpreted due to its limitations, the findings may be useful for understanding the characteristics of HCEPs in US hospitals and the factors associated with these characteristics. This information may contribute to exploring ways to strengthen HCEPs. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Closing the Gaps in Pediatric HIV/AIDS Care, One Step at a TimeLisa V. Adams, Helga Naburi, Goodluck Lyatuu, Paul Palumbo, and C. Fordham von ReynFatuma's* doctors were completely perplexed. It was 2003 and she had returned to the DARDAR clinic in her hometown of Dar es Salaam, Tanzania three times that week with vague complaints of various pains and aches. Her doctors were considering whether these symptoms were (...) due to the initiation of her recent treatment with antiretroviral medications for her HIV infection or related to the last administration of the investigational tuberculosis (TB) vaccine that the DARDAR Health Study was evaluating. Fatuma's doctor, Dr. Lillian Mtei, consulted with Dartmouth's chief of Infectious Disease, Dr. Ford von Reyn, who happened to be in Dar that week on a site visit. Neither physician could determine the basis for her symptoms. Dr. Mtei returned to the exam room once more and this time emerged with the answer: Fatuma had just learned that her three year old daughter was HIV-infected, likely contracted from Fatuma during or shortly after she gave birth to her daughter. Fatuma believed that her HIV diagnosis was a death sentence for her daughter since antiretroviral therapy was not widely available for children.Dr. von Reyn, Dartmouth's lead clinical researcher in Africa and a father, knew too well the harsh reality of inequities in a resource-limited country. He turned to Dr. Mtei and said decidedly, "we need to do something about this."Thus the DARDAR Pediatric Program was born.Pediatric HIV: A Neglected DiseaseThe need for HIV treatment among children in Tanzania, as in most of sub-Saharan Africa, is compelling. At the end of 2009, approximately 160,000 children aged zero to fourteen in Tanzania were living with HIV (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2011). Even with successful roll out of prevention of mother to child transmission programs in Tanzania, there were nearly 29,000 perinatal infections in 2009. As of December 2010, only 18% of these were enrolled in HIV treatment programs (UNAIDS, 2011; World Health Organization [WHO], 2011). Without antiretroviral therapy (ART), one-half of HIV-infected children will die before their second birthday. Since clinical research to determine efficacy and safety of new medical treatments is conducted almost exclusively in adults, provision of new medical treatments to [End Page 75] children always lags behind advances for adults. Furthermore, children are often underrepresented in programs for antiretroviral drugs for the following reasons: 1) they are not prioritized for care; 2) facilities lack infant diagnostic capabilities; 3) there is limited pediatric HIV training and consequently, a shortage of pediatric providers; and 4) pediatric antiretroviral formulations are frequently unavailable. The unacceptable delays in pediatric HIV drug development and treatment access led the international organization Drugs for Neglected Diseases initiative to publish an editorial in which they referred to pediatric HIV as a "neglected disease" (Lallemant, Chang, Cohen, & Pecoul, 2011).The Tip of the Iceberg: More than Just MedicinesWith a grant from the New York-based Foundation for the Treatment of Children with AIDS, the DARDAR Pediatric Program, a joint collaboration between Geisel School of Medicine at Dartmouth and Muhimbili University of Health and Allied Sciences, began seeing patients in May 2006. It was the first dedicated pediatric HIV Care and Treatment Center in Tanzania and operates in accordance with Tanzania's National AIDS Control Programme's guidance. Testing for both children and infants (the latter of which requires a more sophisticated assay) is available.The day the clinic opened we celebrated this collaborative effort that would provide HIV-infected children in Dar es Salaam access to antiretroviral treatment. One of our first patients was a six-year-old boy whose mother, like Fatuma, was a participant in our TB vaccine trial. She had been advised to bring her son to us for HIV screening. Her son looked healthy so she was surprised and understandably distraught when his test results indicated that not only was he HIV-infected, but his CD4 percentage was very low. His mother was reluctant to have him started on antiretrovirals given his general appearance and young age—and that he was... (shrink)

This special issue addresses the legacy of the U.S. Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act. This article offers readers a guide to the themes that emerge in this issue. These themes include individual consent interrelated to consequences in populations issues, need for better government oversight in research and health care, and the need for overhauling our bioethics training to develop a population-level, culturally driven approach to (...) class='Hi'>research bioethics. We hope the guidance offered in this issue will help shape a new framework to bioethics that can be integrated into the foundation of health care reform. (shrink)

A growing body of literature has engaged with mass incarceration as a public health problem. This article reviews some of that literature, illustrating why and how bioethicists can and should engage with the problem of mass incarceration as a remediable cause of health inequities. “Mass incarceration” refers to a phenomenon that emerged in the United States fifty years ago: imprisoning a vastly larger proportion of the population than peer countries do, with a greatly disproportionate number of incarcerated people (...) being members of marginalized racial and ethnic groups. Bioethicists have long engaged with questions of health justice for incarcerated people, including consent issues for those participating in research and access to health care. This article provides an overview of the individual and public health impacts of mass incarceration. The article argues that mass incarceration is a bioethics issue that should be addressed in medical education, identifies opportunities for bioethicists to guide hospitals’ interactions with law enforcement officials, and calls on bioethicists to be in conversation with medical and nursing students and health care professionals about these groups’ advocacy efforts concerning structural racism, police violence, and mass incarceration. (shrink)

In this essay, I offer some reflections on how the topics were identified and approached by the Presidential Commission for the Study of Bioethical Issues, on which I had the honor to serve, in the hope that the reflections may be useful to future national bioethics commissions. In the executive order that established the bioethics commission, President Obama explicitly recognized the ethical imperative to responsibly pursue science, innovation, and advances in biomedical research and health (...) class='Hi'>care, and the importance of national attention to these issues. The bioethics commission prioritized practicable, actionable, targeted recommendations. Like most earlier U.S. national bioethics commissions, President Obama's commission did not undertake projects on significant and troublesome issues related to health and health care that were not associated with new science or technology. Issues such as health care access, health care delivery, opioid addiction, end‐of‐life care, and physician‐aid‐in‐dying are topical and ethically complex areas of significance to bioethics, and they are also being discussed and debated by the public, the media, and policy‐makers. In my view, there are good reasons to select and prioritize projects as well as a justification for confining commission efforts to issues related to novel science and emerging technologies, when there is only one national‐level bioethics commission that has been established by the Office of the President. (shrink)

Hastings Center Report, Volume 52, Issue 3, Page 29-31, May–June 2022.