Research integrity is fundamental to the validity and reliability of scientific findings, and for ethical conduct of research. As part of PRINTEGER (Promoting Integrity as an Integral Dimension of Excellence in Research), this study explores the views of researchers, research managers, administrators, and governance advisors in Estonia, Italy, Norway and UK, focusing specifically on their understanding of institutional and organisational influences on research integrity.A total of 16 focus groups were conducted. Thematic analysis of the data revealed that competition is pervasive (...) and appeared in most themes relating to integrity. The structural frameworks for research such as funding, evaluation and publication were thought to both protect and, more commonly, undermine integrity. In addition, institutional systems, including workload and research governance, shaped participants’ day-to-day work environment, also affecting research integrity. Participants also provided ideas for promoting research integrity, including training, and creating conditions that would be supportive of research integrity.These findings support a shift away from individual blame and towards the need for structural and institutional changes, including organisations in the wider research environment, for example funding bodies and publishing companies. (shrink)

Farmers’ markets, often structured as non-profit or cooperative organizations, play a prominent role in emerging alternative food networks of western Canada. The contribution of these social economy organizations to network development may relate, in part, to the process of regional clustering. In this study we explore the nature and significance of farmers’ market clustering in the western Canadian provinces of British Columbia and Alberta, focusing on the possible connection between clustering and a “scaling up” of alternative food networks. Survey and (...) interview results from four regional clusters indicate that in addition to spatial agglomeration, dynamic processes of interaction and knowledge exchange are occurring and are shaped by vendor mobility as well as collaborative and competitive forces. Horizontal and vertical collaborations are resulting in innovative strategies to address challenges of scale, scope, infrastructure, and organizational capacity that are prevalent in alternative food networks. Government support for market clustering has been modest to date but, we argue, could play a more prominent role in facilitating cluster development as part of a broader collaborative strategy involving public, private, and social economy sectors in the scaling up of alternative food networks. (shrink)

Farmers’ markets, often structured as non-profit or cooperative organizations, play a prominent role in emerging alternative food networks of western Canada. The contribution of these social economy organizations to network development may relate, in part, to the process of regional clustering. In this study we explore the nature and significance of farmers’ market clustering in the western Canadian provinces of British Columbia and Alberta, focusing on the possible connection between clustering and a “scaling up” of alternative food networks. Survey and (...) interview results from four regional clusters indicate that in addition to spatial agglomeration, dynamic processes of interaction and knowledge exchange are occurring and are shaped by vendor mobility as well as collaborative and competitive forces. Horizontal and vertical collaborations are resulting in innovative strategies to address challenges of scale, scope, infrastructure, and organizational capacity that are prevalent in alternative food networks. Government support for market clustering has been modest to date but, we argue, could play a more prominent role in facilitating cluster development as part of a broader collaborative strategy involving public, private, and social economy sectors in the scaling up of alternative food networks. (shrink)

ABSTRACT:This article outlines the policy context for teachers’ learning and continuing professional development in Scotland and considers this in relation to the perspectives of key informants gained through interview. The analysis draws on a triple-lens conceptual framework and points to some interesting contradictions between the policy text and the expressed aspirations of the interviewees. Current policy and the associated structural arrangements are viewed as broadly positive, but interviewees express concerns that an unintended emphasis on contractual arrangements might inhibit the more (...) transformative elements of professional learning. (shrink)

First Published in 1993. Routledge is an imprint of Taylor & Francis, an informa company.

BackgroundDuring the arrival of the COVID-19 pandemic, various professional ethical guidance was issued to (and for) health and social care professionals in England and Wales. Guidance can help to inform and support such professionals and their patients, clients and service users, but a plethora of guidance risked information overload, confusion, and inconsistency. MethodsDuring the early months of the pandemic, we undertook a rapid review, asking: what are the principles adopted by professional ethical guidance in England and Wales for dealing with (...) COVID-19? We undertook thematic content analysis of the 29 documents that met our inclusion criteria.ResultsThe 29 documents captured 13 overlapping principles: respect, fairness, minimising harm, reciprocity, proportionality, flexibility, working together, inclusiveness, communication, transparency, reasonableness, responsibility, and accountability.ConclusionsWe intend this attempt to collate and outline the prominent principles to be helpful, particularly, for healthcare practice during the COVID-19 pandemic and, hopefully, for future pandemic planning. We also offer some reflections on the guidance and the principles therein. After describing the principles, we reflect on some of the similarities and differences in the guidance, and the challenges associated not only with the specific guidance reviewed, but also with the nature and import of “professional ethical guidance”. (shrink)

Heterogeneity within MDD has hampered identification of biological markers (e.g., intermediate phenotypes, IPs) that might increase risk for the disorder or reflect closer links to the genes underlying the disease process. The newer characterizations of dimensions of MDD within Research Domain Criteria (RDoC) domains may align well with the goal of defining IPs. We compare a sample of 25 individuals with MDD compared to 29 age and education matched controls in multimodal assessment. The multimodal RDoC assessment included the primary IP (...) biomarker, positron emission tomography (PET) with a selective radiotracer for 5-HT1A ([11C]WAY-100635), as well as event-related functional MRI with a Go/No-go task targeting the Cognitive Control network, neuropsychological assessment of affective perception, negative memory bias and Cognitive Control domains. There was also an exploratory genetic analysis with the serotonin transporter (5-HTTLPR) and monamine oxidase A (MAO-A) genes. In regression analyses, lower 5-HT1A binding potential (BP) in the MDD group was related to diminished engagement of the Cognitive Control network, slowed resolution of interfering cognitive stimuli, one element of Cognitive Control. In contrast, higher/normative levels of 5-HT1A BP in MDD (only) was related to a substantial memory bias toward negative information, but intact resolution of interfering cognitive stimuli and greater engagement of Cognitive Control circuitry. The serotonin transporter risk allele was associated with lower 1a BP and the corresponding imaging and cognitive IPs in MDD. Lowered 5HT 1a BP was present in half of the MDD group relative to the control group. Lowered 5HT 1a BP may represent a subtype including decreased engagement of Cognitive Control network and impaired resolution of interfering cognitive stimuli. Future investigations might link lowered 1a BP to neurobiological pathways and markers, as well as probing subtype-specific treatment targets. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.4 (2004) 411-425 [Access article in PDF] Vulnerability, Vulnerable Populations, and Policy Mary C. Ruof "Special justification is required for inviting vulnerable individuals to serve as research subjects and, if they are selected, the means of protecting their rights and welfare must be strictly applied."Guideline 13: Research Involving Vulnerable Persons International Ethical Guidelines for Biomedical Research Involving Human Subjects Council for International Organizations (...) of Medical Sciences (CIOMS) and World Health Organization (WHO) Geneva, Switzerland, 2002 Within medical research and healthcare certain groups are afforded special protections and services because of their designation as vulnerable. The vulnerable require special justification to participate in human subject research in order to eliminate potential human rights abuses. The Nuremberg Code of 1947 was written in response to the extreme human subject abuses that occurred under the Nazi regime, and, although the intent of the 1947 Code was to protect human rights, rigid voluntary consent requirements deprived some individuals of the right to participate in clinical trials. Recent human research guidelines, such as the CIOMS/WHO guidelines referenced above and the guidelines referenced in Section V of this Scope Note, attempt to balance both protection from abuse in research and access to new, experimental treatments for the vulnerable.Although various protective guidelines stipulate special protections for vulnerable populations, the concept of vulnerability and consequently the criteria designating vulnerable populations remain vague. Precisely who are the vulnerable? The word "vulnerability" stems from the Latin vulnerare, "to wound." (Oxford Encyclopedic English Dictionary 1995). In clinical research, the term [End Page 411] vulnerable generally is applied to individuals who are unable to give informed consent or who are susceptible to coercion. The Common Rule (45 CFR 46, Subpart A) includes as vulnerable research subjects: children, prisoners, pregnant women, and persons who are handicapped, mentally disabled, economically disadvantaged, or educationally disadvantaged. Although the Common Rule specifies certain vulnerable categories, the guidelines were not intended to be exclusive, leaving open the interpretation of vulnerability.In medical research and health policy, vulnerability is an abstract concept that has concrete effects both for those labeled vulnerable and for those not. Clinical researchers, healthcare workers, ethical reviewers, and policymakers must be able to identify vulnerable subjects to establish how healthcare resources will be allocated and who will qualify for special protections and socialized benefits. Attempts to quantify vulnerability in clear, measurable ways have met little if any consensus. As Alexander Morawa (II, 2003, p. 150) states, "There is no single approach to definition of vulnerability. In fact, there is no purposeful categorisation at all."Difficulties in defining vulnerability have prompted discourse surrounding its utility as a qualifying factor in the allocation of health resources and its appropriateness as a guiding principle in bioethics. Some of the authors cited in this Scope Note argue against the labeling and categorization of vulnerable individuals and populations. "Labeling individuals as 'vulnerable' risks viewing vulnerable individuals as 'others' worthy of pity, a view rarely appreciated" (III, Danis and Patrick 2002, p. 320). The categories of vulnerable groups listed under the Common Rule have been the source of controversy, "for example, many find the suggestion that pregnant women are vulnerable to be quite sexist" (IV, DeBruin 2001, p. 7). Instead of creating categories of vulnerable populations, would it not be better to derive an account of just treatment from a just social policy at large that encompasses human vulnerabilities (II, Brock 2002, p. 283).For some of the authors listed here, the concept of vulnerability is essential to bioethics. Robert Goodin (I, 1985, p. 107) writes that the vulnerability of other human beings is the source of our special responsibilities to them. In contrast to the four American principles of biomedical ethics—autonomy, nonmaleficence, beneficence, and justice—the four principles of European bioethics and biolaw include vulnerability along with autonomy, dignity, and integrity. According to, Jacob Dahl Rendtorff and Peter Kemp (I, 2000, p. 274) "the principle of vulnerability is ontologically prior to the other [European] principles, it expresses better than all of the other ethical principles... the finitude of the human condition."Some of the... (shrink)

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)

Originally published in 1908, this book contains six essays on various aspects of the Platonic theory of knowledge as expounded in the later dialogues reviewed by Aristotle. The text was written during the author's period as Marion Kennedy Student at Newnham College, Cambridge. Textual notes are also included. This book will be of value to anyone with an interest in Plato, Aristotle and classical philosophy.

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)

This article focuses on two possible missions for a national bioethics commission. The first is handling differences of worldview, political orientation, and discipline. Recent work in political philosophy emphasizes regard for the dignity of difference manifested in "conversation" that seeks understanding rather than agreement. The President's Council on Bioethics gets a mixed review in this area. The second is experimenting with prophetic bioethics. "Prophetic bioethics" is a term coined by Daniel Callahan to describe an alternative to compromise-seeking "regulatory bioethics." It (...) involves a critique of modern medicine. In the contemporary context, the areas of biotechnology and access to health care cry out for prophetic attention. The Council has addressed biotechnology; unfortunately, that experience suggests that the kind of prophecy that it practices poses risks to conversation. With regard to access issues, the article proposes an effort that unites themes of human dignity, solidarity, and limits in support of reform, while highlighting, rather than papering over, differences. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Human Gene TherapyMary Carrington Coutts (bio)On September 14, 1990, researchers at the U.S. National Institutes of Health (NIH) performed the first approved gene therapy procedure on a four-year-old girl named Ashanti DeSilva. Born with a rare genetic disease, severe combined immune deficiency (SCID), Ashanti lacked a healthy immune system and was extremely vulnerable to infection. Children with SCID usually develop overwhelming infections and rarely survive to adulthood; even a (...) common childhood illness like chicken pox is life-threatening. Ashanti led a cloistered existence, avoiding contact with people outside her family, remaining in the sterile environment of her home, and battling frequent illnesses with massive amounts of antibiotics.In Ashanti's gene therapy procedure, her own white blood cells were genetically modified and then infused back into her bloodstream. Laboratory tests show that the therapy has strengthened Ashanti's immune system. She no longer has recurrent colds, has been allowed to attend school, and has been immunized against whooping cough. This gene therapy procedure is not a cure, however. The genetically-treated white blood cells only survive for a few months and must then be replaced, but Ashanti's future is much brighter because of the new therapy (VI, Thompson [The First] 1993).Although this simplified description of Ashanti's gene therapy procedure sounds like a happy ending, it is little more than an optimistic chapter in a long story. The road to the first approved gene therapy procedure was rocky and fraught with controversy. The biology of human gene therapy is very complex, and there are still many techniques that need to be developed and diseases that need to be understood more fully before gene therapy is well established. The public policy debate surrounding the possible use of genetically engineered material in human subjects is equally complex. Major participants in the debate come from the fields of biology, government, law, medicine, philosophy, politics, and religion, each bringing different views to the discussion.In studying the ethics of gene therapy, one should draw a distinction between [End Page 63] therapy on somatic (non-reproductive) cells and germ (reproductive) cells. Only the germ cells carry the genes that will be passed on to the next generation. Reactions to gene therapy have varied widely. Some commentators on gene therapy object to any form of genetic manipulation, no matter how well-intentioned (VI, Rifkin 1983). Another reaction is to allow the use of somatic-cell therapy, but not to approve the use of germ-line therapy, which could have unforeseeable effects on future generations. A different stance is that, with proper regulation and safeguards, germ-line gene therapy is a logical extension of the progress made to date and that it is an ethically acceptable procedure.TechniquesTo date, 43 research protocols have been approved for somatic-cell gene therapy in the United States. The techniques employed in each protocol vary, but in general a virus is used as a "vector" to insert the desired gene into the DNA of the patient's cells, in order to compensate for a defective gene. For Ashanti's gene therapy, this technique involved obtaining white blood cells and introducing properly functioning genes into as many of the cells as possible. The normal genes were delivered through the use of a specially-engineered virus.Although similar techniques are used in germ-line gene therapy, the procedure is more difficult. There are two basic ways to perform germ-line gene therapy: (1) to treat a preimplantation embryo that carries a serious genetic defect before its implantation in the mother, which necessitates the use of in vitro fertilization techniques; or (2) to treat the germ cells (sperm or egg cells) of afflicted adults so that the genetic defects would not be passed on to their offspring, which requires the technical expertise to delete the defective gene and insert a properly functioning replacement. Because of the complexity of the procedures involved and the attendant ethical controversy, germ-line therapy is not currently performed.Candidate Diseases for Gene TherapyAt present, gene therapy is likely to be most successful in treating diseases that are caused by single-gene defects and has been approved for treating diseases such... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Teaching Ethics in the Health Care Setting Part I:Survey of the LiteratureMary Carrington Coutts (bio)The last twenty years have brought important changes to health care and health care education. Educators and students alike face an enormous number of new fields of study and new medical technologies. Health care professionals and institutions are also facing new challenges in the form of shrinking economic resources, and the AIDS epidemic. They must (...) also respond to increased patient participation in health care decisions, and public concern about abortion and euthanasia. These challenges to the health care professional have compelled educators to accommodate ethics within their already overcrowded curriculum. Those same dilemmas have influenced health care institutions to become active in health care ethics education.Medical ethics education gained a foothold in the United States during the late 1960s, when the medical schools of Pennsylvania State University, the University of Florida, and the State University of New York at Stonybrook established programs in the humanities (Pellegrino 1982). In 1978 Robert Veatch noted that formal teaching in medical ethics was rare; most institutions that taught medical ethics used "informal instruction in the apprenticeship mode" (Veatch 1978). However, by 1982 a survey by the American Medical Association (AMA) revealed that all but one of the 127 medical schools had courses that included medical ethics. Thirty eight of these had medical ethics as a required course (Pellegrino 1985). And by 1989, 43 of the 127 medical schools had separate courses in medical ethics, while 100 covered medical ethics within required courses. Medical ethics is now an accepted part of medical curriculum, though it is not fully mature, and its future remains somewhat unclear (Miles 1989).The evolution of ethics in the nursing curriculum has essentially mirrored that of the medical curriculum. A 1977 survey of baccalaureate nursing programs revealed that only 7 percent of nursing programs required courses in ethics [End Page 171] (Aroskar 1977). A decade later a second survey of undergraduate programs identified 85 percent of responding nursing schools as teaching nursing ethics either in separate ethics courses or within other required courses (Cassells and Redman 1989).Though the precise future of health care ethics may be unpredictable, there is little thought that the role of ethics will diminish in importance as the 21st century approaches. Ethics is seen as part of a larger plan to develop and enhance the health professional's human values, social conscience, and interpersonal skills. "This broader effort derives from concerns about the personal attributes and humanistic sensitivity of physicians, the recent overly 'scientized' trend in premedical education, the selection of medical students, and the socialization and cynicism engendered by medical education" (Miles 1989, p. 705).While nearly every medical and nursing school in the United States now teaches ethics in one form or another, the degree to which ethics is integrated into the curriculum varies from school to school. Some ethics courses are required elements of the students' education; some institutions require attendance at seminars and ethics grand rounds. Other schools offer an array of elective courses in topics that relate to ethics in medicine and nursing (including medical humanities, medicine and the law, literature and medicine, history of medicine, patient advocacy, and human values in nursing.) "Brown bag" seminars and journal clubs are also common.There is much debate over how health care ethics should be taught. Some argue that medical professionals should be conversant with theories of ethics and principles of biomedical ethics. Others think that a theoretical approach will alienate already over-worked medical or nursing students, and that instruction in ethical theory should be kept to a minimum. Case studies are frequently cited as a way to involve students in medical decision making, forcing them to analyze problems that they can relate to their own experiences.Additional concerns center around who should teach health care ethics. Frequently, physicians and nurses interested in ethics teach courses. Some commentators see this as the most desirable arrangement, asserting that practicing health care professionals best understand the conflicts faced by physicians and nurses-in-training. However, there is a growing pool of professionals who are undergoing training as medical ethicists. These individuals study ethical theory and bioethical... (shrink)

Programs of drug testing welfare recipients are increasingly common in US states and have been considered elsewhere. Though often intensely debated, such programs are complicated to evaluate because their aims are ambiguous – aims like saving money may be in tension with aims like referring people to treatment. We assess such programs using a proportionality approach, which requires that for ethical acceptability a practice must be: reasonably likely to meet its aims, sufficiently important in purpose as to outweigh harms incurred, (...) and lower in costs than feasible alternatives. In the light of empirical findings, we argue that the programs fail the three requirements. Pursuing recreational drug users is not important in the light of costs incurred, while dependent users who may require referral are usually identifiable without testing and typically need a broader approach than one focussing on drugs. Drug testing of welfare recipients is therefore not ethically acceptable policy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Fetal Tissue ResearchMary Carrington Coutts (bio)I. IntroductionThe use of tissue from fetal remains for transplantation and biomedical research has become a controversial issue in recent years, involving scientists, doctors, patients, and the federal government. Fetal tissue is potentially useful in a wide range of treatments for a number of serious diseases, some of them affecting millions of people. Despite the promise, transplantation research using fetal tissue from induced abortion (...) slowed dramatically in the U.S. in 1988, when a moratorium was declared on federal funding for such research involving humans. That moratorium was lifted by President Clinton on January 21, 1993. Though the future of fetal tissue transplantation research is brighter, public debate on the issue is likely to continue, exacerbated by the "acrimonious abortion debate" (VI, Post 1991, p. 14).Using fetal tissue in biomedical research and in transplantation is not a new practice. As early as 1928 unsuccessful attempts were made to transplant fetal pancreas cells into diabetics (VII, Fichera 1928). Fetal tissue was used effectively in biomedical research during the 1950s, and was instrumental in the culture of the polio virus, which led to the development of the polio vaccine. Fetal tissue cultures were also essential in the development of the rubella vaccine, and continue to be used in virology research. Transplantation of fetal thymus cells into patients with DiGeorge Syndrome has been recognized as effective therapy since the late 1960s.Many of the therapeutic applications involving fetal tissue are still experimental, so it is difficult to pinpoint fetal tissue transplantation's therapeutic potential. One promising application is the transplantation of human fetal brain cells into the substantia nigra of patients with Parkinson's disease to restore motor function. Fetal neural transplants have also shown promise for patients suffering from Alzheimer's disease, spinal cord and other neural tissue injuries, and possibly some forms of cortical blindness. Fetal liver cells may be useful for treatment of some kinds of bone marrow disease seen in leukemia and aplastic anemia patients. [End Page 81] Fetal tissue transplantation may also help those suffering from blood clotting disorders, such as sickle cell anemia, thalassemia, and hemophilia. Fetal pancreatic tissue has potential applications in the treatment of diabetes, especially juvenile onset diabetes. Human gene therapy may also employ embryonic and early fetal cells.The Center for Biomedical Ethics at the University of Minnesota reports that more than 1,000 patients have received transplanted fetal tissue worldwide. Countries where fetal tissue transplantation has occurred include: Australia, Canada, China, the Commonwealth of Independent States (formerly the U.S.S.R.), Cuba, Czechoslovakia, Finland, France, Germany, Great Britain, Hungary, India, Italy, Mexico, Norway, Spain, Sweden, and Yugoslavia (IV, Vawter 1992, p. 2; I, Spain 1988; VII, Reinikainen 1989).Fetal tissue has unique characteristics that make it especially valuable in some treatments. Fetal cells develop much faster than adult cells, hastening the therapeutic effect—a potentially significant benefit for gravely ill patients. They are also less likely to be rejected by transplant recipients because they are less antigenic than adult cells. This reduces the need for the exact tissue matches that can be so difficult to obtain. Fetal tissue is also easier to culture and proliferates more readily than comparable adult tissue. Furthermore, fetal tissue is in greater supply, due to the number of elective abortions.Questions about the use of fetuses and fetal tissue in biomedical research were raised in the United States in the early 1970s. Between 1969 and 1973, all 50 states enacted the Uniform Anatomical Gift Act, allowing for the donation of all or part of the body of a dead fetus for research or therapeutic research. Prospects for the use of fetal tissue increased after the Supreme Court decision in Roe v. Wade legalized abortion. As the availability of fetal tissue increased so did the concern over the potential for controversial research on living, soon-to-be-aborted fetuses, and anxiety over maltreatment of dead abortuses. Vivid examples include Geoffrey Chamberlain's 1968 report of an experiment on a fetus of 26 weeks gestational age. Delivered by hysterotomy from a 14-year-old patient, the fetus was attached to an "artificial placenta" and kept alive for more than... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:EugenicsMary Carrington Coutts (bio) and Pat Milmoe McCarrick (bio)The word eugenics (from the Greek eugenes or well-born) was coined in 1883 by Francis Galton, an Englishman and cousin of Charles Darwin, who applied Darwinian science to develop theories about heredity and good or noble birth (I, Kevles 1985, p. x).The entry under "eugenics" in the Encyclopedia of Bioethics notes that the term has had different meanings in different eras: (...) "a science that investigates methods to ameliorate the genetic composition of the human race; a program to foster such betterment; a social movement; and in its perverted form, a pseudo-scientific retreat for bigots and racists" (V, Ludmerer 1978, p. 457). Kevles, who places a stronger emphasis than Ludmerer on the degeneration of eugenics, says that by 1935 it "had become 'hopelessly perverted' into a pseudoscientific facade for 'advocates of race and class prejudice, defenders of vested interests of church and state, Fascists, Hitlerites, and reactionaries generally'" (I, Kevles 1985, p. 164).Phrases such as "survival of the fittest" and "struggle for existence" came into use at the end of the nineteenth century when eugenics societies were created throughout the world to popularize genetic science. "Negative eugenics" utilized marriage restriction, sterilization, or custodial commitment of those thought to have unwanted characteristics. "Positive eugenics" tried to encourage the population perceived as "superior" to have more offspring (V, Ludmerer 1978, p. 459).In the United States, after World War I, new information, such as the importance of environmental influences and the more complex concept of multi-gene effects in inheritance, diminished the scientific justification for eugenics, but this knowledge did not decrease the pressure for legislation, judicial action, or immigration controls. The U.S. Immigration Restriction Act of 1924 favored immigration from northern Europe and greatly restricted the entry of persons from other areas referred to as "biologically inferior." Between 1907 and 1937, 32 [End Page 163] states required sterilization of various citizens viewed as undesirable: the mentally ill or handicapped; those convicted of sexual, drug, or alcohol crimes; and others viewed as "degenerate" (V, Larson 1991).In Germany, interest in eugenics flourished after the turn of the century when Dr. Alfred Ploetz founded the Archives of Race-Theory and Social Biology in 1904 and the German Society of Racial Hygiene in 1905. The German term Rassenhygiene or race hygiene encompassed more than the word "eugenics;" it included all attempts to improve hereditary qualities as well as measures directed at population increase (III, Weiss 1987). By the 1920s, various German textbooks incorporated ideas of heredity and racial hygiene, and German professors were participating in the international eugenics movement. The Kaiser Wilhelm Institute of Anthropology, Human Heredity, and Eugenics was founded in 1927; by 1933 a sterilization law, the Law for the Prevention of Congenitally Ill Progeny, which originally was entitled "Eugenics in the Service of Public Welfare," indicated compulsory sterilization "for the prevention of progeny with hereditary defects" in cases of "congenital mental defects, schizophrenia, manic-depressive psychosis, hereditary epilepsy... and severe alcoholism." (III, Müller-Hill 1988, p. 10).The co-mingling of science, politics, and Weltanschauung (ideological or religious world view) caused the darkest period for eugenics when Nazi Germans embarked on their "final solution" to the Jewish "problem", or the Holocaust. The Nazi racial-hygiene program began with involuntary sterilizations and ended with genocide. Beginning with the 1933 Law for the Prevention of Congenitally Ill Progeny, 350,000 schizophrenic and other mentally ill persons were involuntarily sterilized, and marriage or sexual contact between Jews and other Germans was banned. Several hundred black children and 30,000 German Gypsies were sterilized. By 1945, when the allies liberated those remaining in Nazi concentration camps, six million Jews, 750,000 Gypsies, and 70,000 German psychiatric patients had been killed by the Nazis (III, Müller-Hill 1992, p. 47). As a result of the German experience, eugenic thought dropped to its nadir, and to the present day, the term "eugenics" invokes a sense of horror in some people.Great Britain, the United States, and Germany were the countries most involved with eugenic science in the first half of this century, but interest was present in Europe and other... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Future Directions for Oversight of Stem Cell Research in the United StatesCynthia B. Cohen (bio) and Mary A. Majumder (bio)Human pluripotent stem cell research, meaning research into cells that can multiply indefinitely and differentiate into almost all the cells of the body, has become a minefield in which science, ethics, and politics have collided over the last decade in the United States. President Barack Obama entered this highly charged (...) territory when he indicated during his campaign that once in office he would issue an executive order expanding federally funded human embryonic stem cell (hESC) research and introduce rigorous oversight of it (Obama 2008a & b). Candidate Obama stated that he would require that the hESC lines involved were derived with donor consent from early embryos that otherwise would be discarded following in vitro fertilization (IVF) treatment. However, in contrast with the policy of President George W. Bush, he would do so without regard to the date of their derivation. He added that he would call upon the director of the National Institutes of Health (NIH) to develop guidelines for federally funded hESC and other pluripotent stem cell research that would draw from the guidelines developed in 2005 by the National Academies of Science (NAS) for privately funded research (National Research Council 2005).A similar policy was written into the 2008 version of the Stem Cell Research Enhancement Act, which reiterates the policy enunciated in earlier versions of this bill, passed twice by the Congress but vetoed by President Bush each time (House of Representatives, 110th Congress 2008).1 Depending on how one reads the 2008 version of the act, it could also apply in certain respects to hESC research that is not federally funded. We proceed on the assumption that the act applies at least to federally funded stem cell research. Therefore, it appears that the president or the Congress, or both, will approve of an expanded policy of federal funding of hESC research, as well as other forms of human pluripotent stem cell research. [End Page 79]This policy would make the guidelines developed by a committee appointed by NAS, a prestigious private body of American scientists and related experts, the primary basis for the development of new federal guidelines for oversight of hESC research in the United States. This would have certain advantages in that those familiar with the relevant scientific issues are likely to address them accurately and stem cell investigators are apt to accept restrictions on their research written by fellow scientists and ethics and policy experts whom they perceive as strong supporters of stem cell research. However, it also would have certain disadvantages. Chief among these is that the NAS committee appointed to write guidelines for this research, in its concern to see stem cell science move forward after a period in which many scientists and others maintained that it had been unduly restricted, might have overlooked or deferred consideration of some pressing ethical and policy issues. We maintain that this is the case—although we also maintain that the NAS guidelines provide a responsible foundation for developing NIH guidelines for stem cell research. Consequently, we propose that an NIH task force charged by the director of NIH with writing new guidelines for hESC and other stem cell research should revise and expand the NAS guidelines in ways that we propose below, as well as others that it considers necessary, and make it obligatory for those seeking federal funding of such research to follow these new guidelines.We highlight certain areas in which an ethical case can be made for strengthening the existing NAS guidelines and certain areas in which more fundamental ethical reflection—and building on that, additional guideline/policy development—seems warranted. Among the sections of the NAS guidelines that need clarification and reworking, we include those regarding consent to embryo donation, which provide one of their central focuses, and the development of human-nonhuman chimeras, which they address relatively briefly. In addition, we maintain that new guidelines need to be written to address the nascent ethical and policy issues raised by the possibility that human gametes will be induced from pluripotent stem cells in the next few years and that... (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:Future Directions for Oversight of Stem Cell Research in the United States: An UpdateMary A. Majumder (bio) and Cynthia B. Cohen (bio)On 9 March 2009, President Barack Obama (2009a) signed an executive order revoking the statement issued by President George W. Bush during a televised speech in August 2001, in which the latter had sharply restricted the scope of federally funded human embryonic stem cell (hESC) research to cell (...) lines derived (without federal funding) prior to 9:00 P.M. EDT on 9 August 2001. Action by President Obama to remove the cut-off date had been expected. It came as a surprise, however, that he gave authority to determine the scope of eligible research to the Director of the National Institutes of Health (NIH), referencing only general concerns of responsibility, scientific worth, and legality.1 This contrasted not only with the approach of former President Bush, but also with that of former President Clinton, who had expressed personal opposition to the creation of embryos for research and had a distinction between hESCs derived from embryos created for research and those derived from spare embryos enshrined in NIH policy.President Obama’s remarks upon signing the executive order give some insight into the thinking behind his approach. Implicit in them are the views that earlystage human embryos outside the womb do not have full moral status and that the destruction of human embryos in the effort to care for and ease the suffering of human beings who do have full moral status does not devalue human life. The President also stressed that the decision to pursue hESC research reflected not only his opinion, but also a broad social consensus. He concluded with strong ethical commitments on two fronts:We will develop strict guidelines, which we will rigorously enforce, because we cannot ever tolerate misuse or abuse. And we will ensure that our government never opens the door to the use of cloning for human reproduction. It is dangerous, profoundly wrong, and has no place in our society, or any society.(Obama 2009b)The specific guarantee that President Obama gave against government support for the development of cloning techniques for human reproductive purposes made his silence on the use of cloning for research seem significant. Comments he had made in the course of the campaign (Obama 2008) suggested that he would affirm [End Page 195] the Clinton-era policy of limiting federal funding to hESCs derived from spare embryos. Did this silence mean that President Obama was opening the door to federal funding of research cloning when and if scientists might manage that feat?2009 NIH GuidelinesThe answer to this question and several others came on 17 April, when Raynard Kington, the acting director of NIH, released Draft NIH Guidelines for Human Stem Cell Research (NIH 2009), developed by an NIH Stem Cell Task Force, along with a request for public comment within 30 days of their publication in the Federal Register.2 The 2009 Draft Guidelines exclude from federal funding the derivation of hESCs, a restriction mandated by the reenactment of the Dickey-Wicker Amendment as part of the 2009 Omnibus Appropriations Act (Public Law 111-8, Division F, Title V, § 509). The 2009 Draft Guidelines also exclude the use of hESCs derived from embryos created for research purposes, and so represent a refusal to open the funding door as broadly as the NIH interpretation of the Dickey-Wicker Amendment might allow, at least for the time being.It appears that the drafters used as their starting point the 2000 NIH Guidelines for Research Using Human Pluripotent Stem Cells (NIH 2000) dating from the Clinton Administration, rather than more recent guidelines from the National Academy of Sciences (National Research Council 2005; 2007; 2008) and other private bodies. Both the format and content of the 2000 and 2009 NIH efforts are similar, making the departures in the latter stand out in high relief. We highlight departures related to informed consent to embryo donation, creation of human-nonhuman chimeras, and the role of an NIH task force, updating our original comment (Cohen and Majumder 2009).Informed Consent to Embryo DonationThe 2009 NIH Draft Guidelines require that certain statements... (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)

ABSTRACT:One recent body of work has concerned medicalization and how it can create epistemic injustice. It focuses on medicalization as a hermeneutical process that shapes the conceptual framework(s) we use to refer to some conditions/experiences. In parallel, some scholars with lived experience of madness have started to explore the epistemic harms suffered by the Mad community. Building on this, I argue that the process of medicalization in psychiatry affects the Mad community in a specific way that has been overlooked in (...) the literature on medicalization and epistemic injustice. That is, medicalization can create what is called "contributory injustice." This form of injustice occurs when marginalized communities have been able to create alternative hermeneutical resources, but these resources are dismissed or discredited by the dominant group. I argue that the emerging field of Mad Studies is a victim of this type of injustice when Mad experiences are unilaterally medicalized. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Future Directions for Oversight of Stem Cell Research in the United StatesCynthia B. Cohen (bio) and Mary A. Majumder (bio)Human pluripotent stem cell research, meaning research into cells that can multiply indefinitely and differentiate into almost all the cells of the body, has become a minefield in which science, ethics, and politics have collided over the last decade in the United States. President Barack Obama entered this highly charged (...) territory when he indicated during his campaign that once in office he would issue an executive order expanding federally funded human embryonic stem cell (hESC) research and introduce rigorous oversight of it (Obama 2008a & b). Candidate Obama stated that he would require that the hESC lines involved were derived with donor consent from early embryos that otherwise would be discarded following in vitro fertilization (IVF) treatment. However, in contrast with the policy of President George W. Bush, he would do so without regard to the date of their derivation. He added that he would call upon the director of the National Institutes of Health (NIH) to develop guidelines for federally funded hESC and other pluripotent stem cell research that would draw from the guidelines developed in 2005 by the National Academies of Science (NAS) for privately funded research (National Research Council 2005).A similar policy was written into the 2008 version of the Stem Cell Research Enhancement Act, which reiterates the policy enunciated in earlier versions of this bill, passed twice by the Congress but vetoed by President Bush each time (House of Representatives, 110th Congress 2008).1 Depending on how one reads the 2008 version of the act, it could also apply in certain respects to hESC research that is not federally funded. We proceed on the assumption that the act applies at least to federally funded stem cell research. Therefore, it appears that the president or the Congress, or both, will approve of an expanded policy of federal funding of hESC research, as well as other forms of human pluripotent stem cell research. [End Page 79]This policy would make the guidelines developed by a committee appointed by NAS, a prestigious private body of American scientists and related experts, the primary basis for the development of new federal guidelines for oversight of hESC research in the United States. This would have certain advantages in that those familiar with the relevant scientific issues are likely to address them accurately and stem cell investigators are apt to accept restrictions on their research written by fellow scientists and ethics and policy experts whom they perceive as strong supporters of stem cell research. However, it also would have certain disadvantages. Chief among these is that the NAS committee appointed to write guidelines for this research, in its concern to see stem cell science move forward after a period in which many scientists and others maintained that it had been unduly restricted, might have overlooked or deferred consideration of some pressing ethical and policy issues. We maintain that this is the case—although we also maintain that the NAS guidelines provide a responsible foundation for developing NIH guidelines for stem cell research. Consequently, we propose that an NIH task force charged by the director of NIH with writing new guidelines for hESC and other stem cell research should revise and expand the NAS guidelines in ways that we propose below, as well as others that it considers necessary, and make it obligatory for those seeking federal funding of such research to follow these new guidelines.We highlight certain areas in which an ethical case can be made for strengthening the existing NAS guidelines and certain areas in which more fundamental ethical reflection—and building on that, additional guideline/policy development—seems warranted. Among the sections of the NAS guidelines that need clarification and reworking, we include those regarding consent to embryo donation, which provide one of their central focuses, and the development of human-nonhuman chimeras, which they address relatively briefly. In addition, we maintain that new guidelines need to be written to address the nascent ethical and policy issues raised by the possibility that human gametes will be induced from pluripotent stem cells in the next few years and that... (shrink)

: Catholic teaching has no moral difficulties with research on stem cells derived from adult stem cells or fetal cord blood. The ethical problem comes with embryonic stem cells since their genesis involves the destruction of a human embryo. However, there seems to be significant promise of health benefits from such research. Although Catholic teaching does not permit any destruction of human embryos, the question remains whether researchers in a Catholic institution, or any researchers opposed to destruction of human embryos, (...) could participate in research on cultured embryonic stem cells, or whether a Catholic institution could use any therapy that ultimately results from such research. This position paper examines how such research could be conducted legitimately in a Catholic institution by using an ethical analysis involving a narrative context, the nature of the moral act, and the principle of material cooperation, along with references to significant ethical assessments. It also offers tentative guidelines that could be used by a Catholic institution in implementing such research. (shrink)

Mari Mikkola identifies three primary forms of social injustice—oppression, domination, and discrimination—and asks what makes them wrong. She argues that feminist philosophy has thus far focused heavily on gender as a lens or anchor through which to understand and respond to injustice. In Mikkola's view, this orientation around gender is limiting feminist philosophers' theoretical engagement with the roots of injustice. To remedy this problem, she builds a case for moving toward a more broadly humanist conception of injustice. The humanist feminism (...) that she puts forth centers dehumanization as a way to theorize injustice; dehumanization, for Mikkola, is the very... (shrink)

New methods to analyse social media data provide a powerful way to know publics and capture what they say and do. At the same time, access to these methods is uneven, with corporations and governments tending to have best access to relevant data and analytics tools. Critics raise a number of concerns about the implications dominant uses of data mining and analytics may have for the public: they result in less privacy, more surveillance and social discrimination, and they provide new (...) ways of controlling how publics come to be represented and so understood. In this paper, we consider if a different relationship between the public and data mining might be established, one in which publics might be said to have greater agency and reflexivity vis-à-vis data power. Drawing on growing calls for alternative data regimes and practices, we argue that to enable this different relationship, data mining and analytics need to be democratised in three ways: they should be subject to greater public supervision and regulation, available and accessible to all, and used to create not simply known but reflexive, active and knowing publics. We therefore imagine conditions in which data mining is not just used as a way to know publics, but can become a means for publics to know themselves. (shrink)

This paper compares Sartre's and Nancy's experience of the plurality of beings. After briefly discussing why Heidegger cannot provide such an experience, it analyzes the relation between the in-itself and for-itself in Sartre and between bodies and sense in Nancy in order to ask how this experience can be nauseating for Sartre, but meaningful for Nancy. First, it shows that the articulation of Being into beings is only a coat of veneer for Sartre while for Nancy Being is necessarily plural. (...) Then, it contrasts Nausea as an experience without language with Nancy's thinking of the excription of sense in the thing. (shrink)

This article draws on the cultural materialist paradigm articulated by Raymond Williams to offer a radical historicization of the idea of identity, with a view to clarifying and resolving some of the issues animating the ‘identity politics’ debates currently dividing left academia and activism. First, it offers clarity on the concept ‘identity politics’, demonstrating that we should reserve the term to refer only to politics that mobilize specifically and meaningfully around the concept of identity. Second, and in virtue of this, (...) it provides new insights into five central questions that have driven the identity politics debates: Do identity politics always tend towards essentialism?; Do identity politics inevitably promote a politics of recognition over redistribution?; Do identity politics inevitably create political cleavages rather than solidaristic forms of political action?; What is the relationship between ‘identity politics’ and ‘call-out culture’?; And, are the problems of identity politics resolved by reference to intersectionality? (shrink)

The positive psychology landscape is changing, and its initial identity is being challenged. Moving beyond the “third wave of PP,” two roads for future research and practice in well-being studies are discerned: The first is the state of the art PP trajectory that will continue as a scientific discipline in/next to psychology. The second trajectory links to pointers described as part of the so-called third wave of PP, which will be argued as actually being the beginning of a new domain (...) of inter- or transdisciplinary well-being studies in its own right. It has a broader scope than the state of the art in PP, but is more delineated than in planetary well-being studies. It is in particular suitable to understand the complex nature of bio-psycho-social-ecological well-being, and to promote health and wellness in times of enormous challenges and changes. A unique cohering focus for this post-disciplinary well-being research domain is proposed. In both trajectories, future research will have to increase cognizance of metatheoretical assumptions, develop more encompassing theories to bridge the conceptual fragmentation in the field, and implement methodological reforms, while keeping context and the interwovenness of the various levels of the scientific text in mind. Opportunities are indicated to contribute to the discourse on the identity and development of scientific knowledge in mainstream positive psychology and the evolving post-disciplinary domain of well-being studies. (shrink)

This paper takes up Peter Sloterdijk’s proposition for a new thinking of the world as global foam. After quickly reminding the reader of the main characteristics of “bubbles” as “immune spheres of existence”, I retrace the three phases of the history globalization as they have been developed by Sloterdijk in the Spheres trilogy. I then focus on the third phase, also called Global Age, and try to bring together the two seemingly opposed concepts Sloterdijk has used to discuss the age (...) of globality: “worldly interior” and “foams” by arguing that the former represents our world in its globality while the latter represents it in its irreducible plurality. The result is a system of co-fragility and co-isolation: a compact proximity between fragile entities and the necessary closure of each cell unto itself. If this is the case, the question we need to ask concerns the space left opened in the worldly interior for a ‘world-forming’ praxis. In the end politics can only consist in “managing” the worldly interior, stabilizing it and regulating its exchange with an outside. Without overview, without initiative, it is not clear in what ways politics can still be a trans-forming praxis and is not a mere function of the system. (shrink)

In this article, I pursue the question whether it is possible to understand Derridean ethics in terms of space rather than time. More precisely, I ask whether what Derrida proposes as an ethics (and exactly what that is will have to be explained) falls under the general heading of future-oriented, ‘eschatological’ or ‘messianic’, ethics that sacrifices the present for a better future, or whether it can be understood in terms of presence, more specifically of the demand to cohabit here and (...) now in the world. After proposing a reading of the to-come in terms of the intrusion of exteriority in the present, I turn to the figure of hospitality to show that Derrida's ethics is better understood in spatial rather than temporal terms: it requires a certain way of relating to the space in which we dwell. (shrink)

Cartesianism constitutes a particular and crucial moment in the history of the relations between the aims of philosophy and feminist claims. This is explained by theoretical reasons (the new Cartesian science posits a human being that is fundamentally non-sexual and ungendered) and by practical reasons (the importance of the philosophical vocations for women and the feminist vocations for men that Cartesianism has permitted). Recent readings of Descartes (which see him either as a misogynist or as a philogynist) show that the (...) theoretical connections between Cartesianism and feminism are strong: Cartesianism powerfully questions the relation of women to philosophy, both as subjects and as philosophical objects. (shrink)

Back cover: This book develops a philosophical account that reveals the major characteristics that make an explanation in the life sciences reductive and distinguish them from non-reductive explanations. Understanding what reductive explanations are enables one to assess the conditions under which reductive explanations are adequate and thus enhances debates about explanatory reductionism. The account of reductive explanation presented in this book has three major characteristics. First, it emerges from a critical reconstruction of the explanatory practice of the life sciences itself. (...) Second, the account is monistic since it specifies one set of criteria that apply to explanations in the life sciences in general. Finally, the account is ontic in that it traces the reductivity of an explanation back to certain relations that exist between objects in the world (such as part-whole relations and level relations), rather than to the logical relations between sentences. Beginning with a disclosure of the meta-philosophical assumptions that underlie the author’s analysis of reductive explanation, the book leads into the debate about reduction(ism) in the philosophy of biology and continues with a discussion on the two perspectives on explanatory reduction that have been proposed in the philosophy of biology so far. The author scrutinizes how the issue of reduction becomes entangled with explanation and analyzes two concepts, the concept of a biological part and the concept of a level of organization. The results of these five chapters constitute the ground on which the author bases her final chapter, developing her ontic account of reductive explanation. (shrink)