Americans are confronting
challenges in bioethics every day, from hospital rooms and research labs to
Congress and the Supreme Court. Developments in genetics, the sequencing of
the Human Genome, and technologies that extend and even create life are raising
complex questions in medical decisions and treatment.
When does life
begin, and what constitutes death? Who is the mother of a child produced by
surrogacy or by combining the genetic material of two women and a man? Is it
moral to allow parents to select the sex of their child or genetically enhance
certain traits? Should an alcoholic or smoker receive a new organ instead of
someone who did not engage in risky behavior? Bioethics is an interdisciplinary
approach to these and other issues. It draws on law, philosophy, religion, history,
sociology, anthropology and literature to explore questions stemming from innovations
in medicine and science. Historians variously date the birth of bioethics to
the 1960s and the beginning of the Seattle artificial kidney program, to the
1972 public revelation of the 40-year-old Tuskegee syphilis experiment on African-American
men, or the 1975 collapse of Karen Ann Quinlan, who spent a decade in a persistent
vegetative state. Most bioethicists consider the four governing principles of
bioethics to be autonomy, beneficence, nonmaleficence (doing no harm) and justice.
These were articulated by Tom Beauchamp and James Childress in their book Principles
of Biomedical Ethics (Oxford University Press, 1994).
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Major
issues
Some of the major
issues on the current bioethics agenda include:
• Embryonic
stem cell research - The U.S. ban on embryonic stem cell research has produced
fissures within the religious and scientific communities and led to a "brain
drain" - scientists leaving the country to work where laws allow more research.
Is taking cells from a frozen embryo marked for destruction unethical? Can the
same research benefits be gotten from adult stem cell research? Does the potential
for curing diseases such as diabetes and Parkinson's outweigh concerns for the
frozen embryo?
• Genetic
testing - Is there an ethical imperative to be tested for known disease
genes, like the BRCA1/2 genes for breast cancer, and if so, how can confidentiality
be preserved? Should one be tested for a gene, such as the Huntington's disease
mutation, if no treatment exists? Do companies developing genetic tests have
an obligation to the public to restrict commercialization of tests if no treatment
exists for the condition?
• Physician-assisted
suicide - Does a person have the moral right to terminate his or her own
life? Can a physician, who swears by the Hippocratic Oath to protect life, be
allowed to help? If so, in what circumstances? Oregon is the only state in which
physician-assisted suicide is legal, and most states consider suicide a criminal
act.
• End-of-life
issues - When can care be ethically terminated for critically ill patients?
What is the difference between removing the barriers to death and prolonging
life? What constitutes death - brain death, or the cessation of heart function
and respiration? When can organs be removed from a dying patient for transplant?
• Assisted
reproductive technologies - New technologies have moved far beyond in vitro
fertilization, which was first successfully performed more than three decades
ago. Many raise new questions, including who are the legal parents and what
are their rights and responsibilities? Issues include egg donation, sperm donation,
sex selection, surrogate births, the use of donated genetic material from two
women, and genetic diagnosis before embryo implantation.
• Organ
transplantation - Patients in desperate need of transplants - hearts, kidneys,
livers - far outnumber donors. How should organs be allocated - according to
who is most sick or who can benefit most? Is it ethical to sell organs from
live donors and offer incentives to families of potential donors? Is the commodification
of organs on the open market ethical, or does it lead to abuses, such as undue
financial pressure on low-income individuals and on families who could be persuaded
to go against the wishes of the donor?
• Xenotransplantation
- The development and use of animal tissues and organs for transplantation into
humans has the potential to ease shortages, but it is fraught with problems,
given the possible transfer of animal viruses to humans. What protections should
be put in place to ensure safety, and what ethical considerations must be considered
regarding the breeding and use of animals for tissue and organ harvest?
• Research
ethics - Testing new drugs, devices and procedures calls into question how
patients' interests can best be protected. What is required for informed consent?
Can a cancer patient who participates in a clinical trial with the hope of a
miracle cure give it? Should gene therapy trials have more stringent rules than
other clinical trials? Bioethicists are concerned with sufficient protection
of human subjects, proper oversight and investigator conflict-of-interest.
• Health-care
resource allocation - Most health-care money is spent on the beginning of
life (premature birth or birth defects) or the end. Health-care resources are
limited; should spending be rationed, and if so, by what criteria?
• Gene
therapy - This experimental treatment involves changing or repairing defective
genes to treat, cure or possibly prevent disease. Gene therapy has resulted
in death (of Jesse Gelsinger in 1999) and disease, however, so do the benefits
outweigh the risks?
• Genetic
research among indigenous peoples - Many pharmaceutical and biotech companies,
as well as university researchers and international consortia, are conducting
genetic research in native populations to find disease-related genes. Is such
research, sometimes dubbed "helicopter science," ethical if the subjects
will not benefit from the research? Bioethicists are working with researchers
to develop protocols that are fair and can benefit research subjects.
• Gene
patenting - Is patenting disease genes ethical? What about patenting cells,
or components of cells? Bioethicists are divided about whether it is permissible
to patent genes, why and under what circumstances.
• Neuroethics
- This field encompasses a range of ethical questions that are emerging from
research in neuroscience, psychiatry and pharmacology and that touch on issues
of consciousness, personality and spirituality. It also includes the ethics
of neuroimaging and cognitive enhancement.
• Genetically
engineered food - Some maintain that genetically engineering food goes against
nature, while others say that feeding famine victims rice engineered to contain
extra nutrients is a greater good.
Organizations
Government
• The President's
Council on Bioethics is a 17-member panel appointed by President Bush in
2001 to replace the former National Bioethics Advisory Council. The new council
is headed by Dr. Edmund
Pellegrino of Georgetown University Medical Center and includes physicians,
lawyers, political scientists, a philosopher and a scientist. It advises the
president on a range of bioethics questions. Contact 202-296-4669, info@bioethics.gov.
• The
National Institutes of
Health Department of Clinical Bioethics in Bethesda, Md., is the NIH's bioethics
research and teaching branch. Begun in 1996, the department offers fellowships
and conferences and has an ethics consultation service. Dr. Ezekiel Emanuel
is chairman. Contact 301-496-2429, bioethics@nih.gov
or bioethics-inquiries@mail.nih.gov.
• The
National Human Genome Research
Institute is headed by Dr. Francis
Collins at the National Institutes of Health in Bethesda, Md., who directed
the Human Genome Project. The Genome Research Institute established a program
in 1990 to foster basic and applied research on the ethical, legal and social
implications of genetic and genomic research for individuals, families and communities.
Read the summary of a recent policy roundtable, The
Future of Genomic Medicine: Policy Implications for Research and Medicine,
for a good overview of bioethics issues in genomics. The Human Genome Project's
page on ethical,
legal and social issues includes a "genome glossary" and a primer
on genetic science. Contact Geoff Spencer, 301-451-8325, spencerg@mail.nih.gov.
International
• The World
Health Organization's web site contains information about the Human Genome
Project, xenotransplantation and other bioethics issues. The site also includes
Council for International Organizations of Medical Sciences information about
human subject research across borders. Contact 011-41-22-791-22-22, mediainquiries@who.int.
• The Nuffield
Council on Bioethics in the United Kingdom was established in 1991 to identify
and assess ethical questions raised by advances in biological and medical research.
Since 1994, it has been funded jointly by The Nuffield Foundation, the Medical
Research Council and the Wellcome Trust. Two current projects focus on prolonging
life in fetuses and the newborn and the ethics of public health; past projects,
with reports available on its web site, include the ethics of research involving
animals, stem cell therapy and genetically modified crops. Contact 011-44-20-7681-9619,
bioethics@nuffieldbioethics.org.
• The European
Union's bioethics activities are described on its web site, as is information
on national bioethics committees, laws, policy issues and relevant national
bioethics documents. Contact Waldemar.Kutt@ec.europa.eu.
National
• The American
Society for Bioethics and Humanities in Glenview, Ill., is a professional
advocacy group that brings together bioethicists from medicine, nursing, law,
sociology, anthropology, government and philosophy. The society organizes a
large educational conference each year and periodic smaller, topical meetings.
It has an excellent resource
page that lists bioethics institutes, programs and online texts and other
resources. Contact 847-375-4745, info@asbh.org.
• The American Society of
Law, Medicine & Ethics in Boston is a resource for professionals at the
nexus of law, medicine and ethics. It focuses on issues including end-of-life
care, medical privacy and health disparities. The society also publishes a journal.
Its executive director is Benjamin Moulton. Contact 617-262-4990, bmoulton@aslme.org.
• The Public Responsibility
in Medicine and Research/Applied Research Ethics National Association in
Boston focuses on the ethics of human and animal research. It organizes conferences
each year that are attended by researchers, subject advocates, ethicists, policy-makers,
attorneys and pharmaceutical and biotech leaders. Joan Rachlin is executive
director. Contact 617-423-4112, jrachlin@primr.org
or info@primr.org.
• The nonprofit Hastings
Center in Garrison, N.Y., explores bioethics questions in health care, biotechnology
and the environment. Recent research projects range from genetic paternity testing
to newborn screening to palliative care. Contact 845-424-4040. Media contact
is Greg Kaebnick, kaebnickg@thehastingscenter.org.
• The American
Medical Association's Institute for Ethics is an academic research center.
The AMA has ongoing projects in ethics, human rights, public health preparedness
and other topics. Contact 312-464-4430 or 800-621-8335.
• The American College of Physicians - American Society of Internal Medicine's
Center for Ethics
and Professionalism focuses on developing and carrying out policy on issues
related to medical ethics. Its ethics and human rights committee develops educational
programs on bioethics, human rights and professionalism. Contact director Lois
Snyder at 215-351-2835, lsnyder@acponline.org.
• The University
of Pennsylvania Center for Bioethics in Philadelphia is the pre-eminent
bioethics center in the United States, with more than 20 faculty, led by Arthur
Caplan. It opened in 1994 and is devoted to teaching and research. The center's
staff includes
experts in philosophy, medicine, law, anthropology, sociology and religion.
Its web site is an excellent
place to start an exploration of any bioethics topic and is also home to The
American Journal of Bioethics. Contact 215-898-7136.
• Georgetown University is the nation's oldest Catholic and Jesuit university,
home to the Kennedy
Institute of Ethics, the oldest academic bioethics center (see its scholars);
the National
Bioethics library and the National
Reference Center for Bioethics Literature -- the world's largest collection
of information on biomedical ethics -- as well as the National
Information Resource on Ethics and Human Genetics, funded by the National
Human Genome Research Institute of the National Institutes of Health. A pioneering
bioethics institution, Georgetown has trained many of the most pre-eminent contemporary
bioethicists. Its Center
for Clinical Bioethics was established in 1991 at Georgetown University
Medical Center as a university-based bioethics resource for those who shape
and give health care. It brings together scholars with expertise in philosophy,
law, theology, basic science and clinical practice, and trains nursing and medical
students and doctoral candidates. Contact 202-687-0100.
• Boston University's health law, bioethics and human rights department
at the School of Public Health
focuses on law and public policy, as well as patients' rights. Chairman George
Annas, as well as Dr. Michael Grodin, Wendy Mariner and Leonard Glantz, are
pre-eminent scholars in the field. Contact 617-414-1401.
• Johns
Hopkins University's Phoebe
R. Berman Bioethics Institute is a large research and teaching institute
that addresses health policy, medical care and the biological and behavioral
sciences; promotes research on the intersection of ethics, law, medicine and
science; and provides service to the government and private sector. It has formal
programs in cell engineering, ethics and public policy; ethics and brain sciences;
bioethics and public policy; ethics in clinical practice; and research ethics.
It has close ties to scientists working at the school in the forefront of stem
cell science and runs conferences on that subject. The institute's director
is Ruth Faden. See a list
of faculty. Contact 410-516-8500, bioethic@jhsph.edu.
• Tuskegee
University's National
Center for Bioethics in Research and Health Care was established in January
1999 as a partial response to the apology of President Clinton for the United
States Public Health Service Study on Syphilis conducted at Tuskegee, Macon
County, Ala., from 1932 to 1972. The center addresses ethical issues in science,
technology and health, with an emphasis on effects among people of color and
other minorities. Contact 334-724-4612, bioethics@tuskegee.edu.
• The
University of Minnesota's Center
for Bioethics was founded 21 years ago and is one of the leading research
centers for bioethics, with 15 full- and part-time faculty.
The center conducts original interdisciplinary research, offers educational
programs and fosters public discussion through community outreach. The center
focuses on the policy level, working closely with policy-makers, health-care
professionals and university communities. Projects
include the Genetics and Identity Project, Genetics in Primary Care: Ethical
and Professional Challenges, African Genealogy and Genetics: Looking Back to
Move Forward and Blueprint of the Body on the Human Genome Project. Contact
612-624-9440, bioethx@umn.edu.
Religious
CHRISTIAN • The
National Catholic Bioethics Center
in Philadelphia conducts research and consultations in health care and life
sciences in accordance with teachings of the Catholic Church. It consults on
life science and medical issues with the Vatican, U.S. bishops, public policy-makers,
hospitals and international organizations of all faiths. It publishes two journals,
Ethics and Medics and The National Catholic Bioethics Quarterly.
Contact 215-877-2660.
• The
Center for Christian
Bioethics, which opened in 1984, sponsors teaching, research and service
in biomedical ethics and related fields at Loma Linda University in California.
The university includes a health sciences campus operated by the Seventh-day
Adventist Church. It conducts monthly bioethics grand rounds at Loma Linda University
Medical Center; an annual bioethics seminar in medicine, law and ministry; and
occasional national and international conferences on issues of current interest.
Contact 909-558-4956, mcarr@llu.edu.
• The
National Council of Churches
formed a Human
Genetics Policy Development Committee in 2004 to guide the ecumenical community's
work on human genetic technology. Its chairwoman is Clare Chapman, NCC vice
president and executive director of finance and administration for the United
Methodist Church General Commission on Church Unity and Interreligious Concerns
in New York. The committee also includes scientists, ethicists and clergy. The
council is planning a conference on biotechnology next year. Contact Carol Fouke,
212-870-2252, news@nccusa.org.
• Neiswanger
Institute for Bioethics and Health Policy at Loyola University of Chicago's
Stritch School of Medicine in Maywood, Ill., is a pluralistic bioethics institute
that draws upon its commitment to social justice of the Jesuit and Roman Catholic
heritage. Contact 708-327-9200, bioethics@lumc.edu.
• The Center for Bioethics
and Human Dignity in Bannockburn, Ill., helps individuals and organizations
address bioethical challenges, including end-of-life treatment, genetic intervention,
euthanasia and reproductive technologies, from a Christian perspective. It was
launched in 1994 after more than a dozen leading Christian bioethicists gathered
to assess the noticeable lack of explicit Christian engagement in the bioethics
arena. The center collaborates with many groups, including the Christian Medical
and Dental Society and the Christian Legal Society. Its web site contains articles
with overviews on various topics in bioethics, some position statements, bibliographies
and podcasts. Contact 847-317-8180, info@cbhd.org.
• Baptists for Life's Center
for Biblical Bioethics in Grand Rapids, Mich., sponsors the "Biblical
Bioethics Advisor" newsletter to provide pastors, Christian counselors,
physicians and others with a digest of current issues in bioethics and an overview
of biblical approaches to resolving the moral conflicts they present. The center,
which opposes abortion, also advocates for the elderly, handicapped and terminally
ill "who are threatened by euthanasia." Contact 616-257-6800, b4life@bfl.org.
JEWISH
• The National Association
of Judaism and Medicine in Brooklyn, N.Y., provides a forum for issues raised
by advancements in medical science. The association, founded in 1988 and sponsored
in part by the State University of New York-Downstate Medical Center, examines
issues through the lens of Jewish ethical tradition by bringing together leaders
in medical science and rabbinic scholars. Contact director Dr. Michael "Moshe"
Akerman, 917-760-2770.
• The Reconstructionist Rabbinical College's Levin-Lieber
Program in Jewish Ethics in Wyncote, Pa., trains rabbis in practical ethics.
Contact 215-576-0800.
MUSLIM
• The Islamic Medical Association
of North America, based in Lombard, Ill., promotes greater awareness of
Islamic medical ethics and values among Muslims and others, provides humanitarian
and medical relief and acts as an advocate for health-care policy. Contact 630-932-0000,
hq@imana.org.
• The Islamic Organization for Medical Sciences' site, Science,
Environment and Technology, contains information on conferences on bioethics
and Islam and articles on cloning, alternative medicine, biotechnology and genetics,
and other bioethics-related topics.
Individuals
National
• Lori
B. Andrews is a law professor; director of the Institute for Science, Law
and Technology; and associate vice president of the Chicago-Kent College of
Law at the Illinois Institute of Technology in Chicago. Andrews has served as
an adviser on genetic and reproductive technology to Congress, the World Health
Organization, the National Institutes of Health, Centers for Disease Control,
the Department of Health and Human Services, the Institute of Medicine of the
National Academy of Sciences and several foreign nations. She served as chairwoman
of the federal Working Group on the Ethical, Legal and Social Implications of
the Human Genome Project and recently served as a consultant to the science
ministers of 12 countries on the issues of embryo stem cells, gene patents and
DNA banking. Andrews has written 10 books, including The Clone Age: Adventures
in the New World of Reproductive Technology (Holt, 1999) and Future Perfect:
Confronting Decisions About Genetics (Columbia University Press,2001) and
co-authored Genetics: Ethics, Law and Policy (West Publishing, 2002)
and The Body Bazaar: The Market for Human Tissue in the Biotechnology Age
(Crown Publishers, 2001). Contact 312-906-5000, landrews@kentlaw.edu.
• Margaret
P. Battin is Distinguished Professor of Philosophy and Adjunct Professor
of Internal Medicine, Division of Medical Ethics, at the University of Utah
in Salt Lake City. The author of prize-winning short stories and recipient of
the University of Utah's Distinguished Research Award, she has authored, edited
or co-edited 15 books, among them a study of philosophical issues in suicide;
a scholarly edition of John Donne's Biathanatos; a collection on age-rationing
of medical care; Puzzles About Art, a volume of case-puzzles in aesthetics;
a text on professional ethics; Ethics in the Sanctuary, a study of ethical
issues in organized religion; and a collection of her essays on end-of-life
issues, titled The Least Worst Death. She has also been engaged in research
on active euthanasia and assisted suicide in the Netherlands. She has published
Ethical Issues in Suicide, trade-titled The Death Debate, as well
as several co-edited or co-authored collections, including Drug Use in Euthanasia
and Assisted Suicide; Physician-Assisted Suicide: Expanding the Debate;
Praying for a Cure, a jointly authored volume on the ethics of religious
refusal of medical treatment; and Medicine and Social Justice. She is
currently at work on a historical sourcebook on ethical issues in suicide, a
book on world population growth and reproductive rights, and two multiauthored
projects, one on ethics and infectious disease and one on drugs and justice.
A second collection of her essays and fiction on end-of-life issues, Ending
Life (Oxford University Press), was published in 2005. Contact 801-581-6608,
battin@utah.edu.
• Tom
Beauchamp is a professor of philosophy and a senior research scholar at
Georgetown University's Kennedy Institute of Ethics in Washington, D.C. In 1976,
he joined the staff of the National Commission for the Protection of Human Subjects
of Biomedical and Behavioral Research, where he wrote the bulk of The Belmont
Report (1978), the first and still-definitive document on patients' rights
and human experimentation. Beauchamp is a co-author of Principles of Biomedical
Ethics (Oxford University Press, 2001). Contact 202-687-6726, beauchat@georgetown.edu.
• Daniel
Callahan is a co-founder of the Hastings Center in Garrison, N.Y., director
of its international program and a senior fellow at the Harvard Medical School,
directing its ethics track. Much of his recent research focuses on health-care
and research policy. His project on medicine and the market is examining the
impact of market theory on health-care systems, with special attention to equity
and health-care costs. He is the author or editor of 36 books, including The
Research Imperative: What Price Better Health? (University of California
Press, 2003) and False Hopes: Overcoming the Obstacles to a Sustainable,
Affordable Medicine (Simon & Schuster and Rutgers University Press, 1998).
Contact 914-424-4040, callahand@thehastingscenter.org.
• Nigel
Cameron is president of the Institute on Biotechnology and the Human Future
at Chicago-Kent College of Law. He is also director of the Center
on Nanotechnology and Society; director of the Council for Biotechnology
Policy in Washington, D.C.; chairman of the Centre for Bioethics and Public
Policy in London; and Research Professor of Bioethics and Associate Dean at
Chicago-Kent College of Law. He formerly was provost and distinguished professor
of theology at Trinity International University in Deerfield, Ill., and he is
founder of the journal Ethics and Medicine. 312-906-5296, ncameron@kentlaw.edu.
• Arthur
Caplan is a professor and chairman of bioethics at the University of Pennsylvania
and director of the university's Center for Bioethics. The go-to ethicist is
author and editor of more than 25 books and 500 journal articles. Caplan has
written and spoken widely on transplantation research ethics, genetics, right-to-die,
reproductive technologies and general bioethics. He has served on numerous national
and international committees, including as chairman of the advisory committee
to the United Nations on human cloning, member of the Presidential Advisory
Committee on Gulf War Veterans' Illnesses and consultant to government and industry
on a wide range of issues. He is a frequent media commentator on bioethics.
He co-edited The
Case of Terri Schiavo: Ethics at the End of Life (Prometheus Books,
2006). Contact 215-898-7136, caplan@mail.med.upenn.edu.
• Alta
Charo is a professor of law and bioethics at the University of Wisconsin
in Madison, where she teaches at the law and medical schools. She teaches and
writes about health law, bioethics and biotechnology law, medical ethics and
reproductive rights. She was a member of the National Bioethics Advisory Committee
from 1996-2001 and participated in drafting its reports on cloning, research
on people with mental disorders that may affect decision-making, research with
human biological materials and ethical issues in stem cell research. Contact
608-262-5015, racharo@wisc.edu (she is
a visiting professor of law at the University of California at Berkeley through
December 2006).
• James
F. Childress is a professor of religious studies at the University of Virginia
in Charlottesville. He co-wrote Principles of Biomedical Ethics (Oxford
University Press, 1994), co-edited the Dictionary of Christian Ethics
(Westminster, 1986), and wrote Moral Responsibility in Conflicts: Essays
on Nonviolence, War and Conscience (Louisiana State University Press, 1983).
Childress was vice chairman of the national Task Force on Organ Transplantation.
Contact 434-924-6724, jfc7c@virginia.edu.
• Bill Colby was the attorney for the Nancy Cruzan family in the first
right-to-die case heard by the U.S. Supreme Court. He is author of Unplugged:
Reclaiming Our Right to Die in America (AMACON, 2006), and Long Goodbye:
The Deaths of Nancy Cruzan (Hay House, 2002). Contact him in Kansas, 913-432-1028,
bcolby25@aol.com.
• Arthur
Derse is director of medical and legal affairs, associate director of the
Center for the Study
of Bioethics, and clinical professor of bioethics and emergency medicine
at the Medical College of Wisconsin. He serves as a consultant and board member
of a many nationally known bioethics groups. Contact 414-456-8498, aderse@mcw.edu.
• Troy
Duster is a professor of sociology at New York University in New York City
who focuses on the sociology of science, the sociology of race and ethnicity,
policy and deviance. Duster has written numerous books, including Backdoor
to Eugenics (Routledge, 2003), and many articles on race, genetics, genomics
and eugenics, including "The Hidden Eugenic Potential of Germ-Line Interventions"
in Designing Our Descendants: The Promises and Perils of Genetic Modifications
(Johns Hopkins University Press, 2003) and "Buried Alive: The Concept of Race
in Science" in Genetic Nature/Culture: Anthropology and Science Beyond the
Two-Culture Divide (University of California Press, 2003). Contact 212-998-8882,
troy.duster@nyu.edu.
• Dr. Ezekiel
J. Emanuel is chief of the department of clinical bioethics at the National
Institutes of Health. An oncologist, Emanuel also has a doctorate in political
philosophy from Harvard University. He has published widely on the ethics of
clinical research, advance care directives, end-of-life care issues, euthanasia,
health-care reform, the ethics of managed care and the physician-patient relationship.
His books on medical ethics include The Ends of Human Life (Harvard University
Press, 1991) and No Margin, No Mission: Health-Care Organizations and the
Quest for Ethical Excellence (Oxford University Press, 2003). In 2004, Emanuel
was elected to membership in the Institute of Medicine of the National Academy
of Science. He served on President Clinton's Health Care Task Force, the National
Bioethics Advisory Commission and the bioethics panel of the Pan American Health
Organization. Contact eemanuel@nih.gov.
• Christine
Grady is head of the section on human subjects research in the department
of clinical bioethics at the W.G. Magnuson Clinical Center at the National Institutes
of Health in Bethesda, Md. A nurse with a doctorate in bioethics, Grady has
served as a consultant to international bodies, such as UNAIDS, and spent two
years in Brazil with Project Hope. She is the author of Search for an AIDS
Vaccine: Ethical Issues in the Development and Testing of a Preventive HIV Vaccine
(Indiana University Press, 1995). Contact 301-435-8710, cgrady@nih.gov.
• Jeffrey
Kahn is director of the Center
for Bioethics and a professor of medicine at the University of Minnesota
in Minneapolis. From April 1994 to October 1995, he was associate director of
the White House Advisory Committee on Human Radiation Experiments, which culminated
in the publication of The Human Radiation Experiments (Oxford University
Press, 1996). Kahn examines the intersection of ethics and public health policy,
including research ethics, ethics and genetics, and ethical issues in public
health. He has served on numerous state and federal advisory panels and speaks
nationally and internationally on a range of bioethics topics. His book examining
justice and research ethics is titled Beyond Consent: Seeking Justice in
Research (Oxford University Press, 1998). Contact 612-624-9440, kahnx009@umn.edu.
• Dr. Joanne
Lynn is a pioneer in palliative care and care of the dying, a geriatrician,
a health services researcher and an ethicist. Lynn is a senior researcher with
RAND Health, trying to improve the care of people facing chronic illnesses that
eventually will be fatal. Lynn was co-director of SUPPORT (the Study to Understand
Prognoses and Preferences for Outcomes and Risks of Treatments), which studied
10,000 seriously ill hospitalized people and tested an intervention to improve
decision-making. Lynn has served as chairwoman for various efforts to improve
end-of-life care. She is past president of Americans for Better Care of the
Dying and is the author or editor of numerous books, including Sick to Death
and Not Going to Take It Anymore: Reforming Health Care for the Last Years of
Life (University of California Press, 2004). Contact jlynn@rand.org.
• Ruth
Macklin is a bioethics professor in the department of epidemiology and social
medicine at Albert Einstein College of Medicine in the Bronx, N.Y. A philosopher
by training, Macklin focuses on ethics in research involving human subjects,
with a special interest in international collaborative research conducted in
developing countries. Other areas of interest are HIV/AIDS and reproductive
health, access to treatment, public health, assisted reproduction, research
involving embryos and stem cells, and gene transfer research. She is also a
member of the Columbia University Center for Bioethics external advisory board.
Contact 718-430-3574, macklin@aecom.yu.edu.
• Glenn
McGee is director of the Alden
March Bioethics Institute at Albany Medical College and the John A. Balint
Endowed Chair of Medical Ethics in the Albany Medical College. The institute
seeks to research areas of innovation in biomedicine to which bioethics has
not yet been systematically applied. McGee's own work seeks to show the connections
between moral life, medicine and biomedical sciences. His research interests
focus on the regulation of reproductive technology, genetics, stem cell research,
cloning and the theory of bioethics. His books include The Perfect Baby:
Parenthood in the New World of Cloning and Genetics (Rowman & Littlefield,
2000), Beyond Genetics (HarperCollins, 2004), Pragmatic Bioethics
(Vanderbilt University Press, 2002) and The Human Cloning Debate (Berkeley
Hills, 2005). Contact 518-262-6082, glenn.mcgee@bioethics.net.
• Dr.
Steven
Miles is a professor of medicine and bioethics at the University of Minnesota's
Medical School and Center for Bioethics in Minneapolis, and he is a past president
of the American Society of Bioethics and Humanities. He is an author of the
original "do not resuscitate" order and has been active in state and national
health-care reform. His books include The Hippocratic Oath and the Ethics
of Medicine (Oxford University Press, 2004) and Oath Betrayed: Military
Medicine and the War on Terror (Random House, July 2006). He has also published
30 chapters and 100 peer-reviewed articles on medical ethics, human rights,
tropical medicine, end-of-life care and geriatric health care. He served on
President Clinton's Bioethics Working Group on Health Care Reform. Miles' work
changed tuberculosis treatment for refugees and end-of-life care and has led
to the reduction of restraints in nursing homes. His international work includes
25 years of work with the American Refugee Committee. Contact 612-624-9440,
miles001@umn.edu.
• Thomas
H. Murray is president of the Hastings Center in Garrison, N.Y., and formerly
director of the Center for Biomedical Ethics at Case Western Reserve University
School of Medicine in Cleveland. Murray is the author of more than 200 publications
and has testified before congressional committees on many bioethics issues.
He serves on many advisory committees and editorial boards and was on the National
Bioethics Advisory Commission from 1996 to 2001. He has spoken and written about
biomedical enhancement, gene therapy, stem cell research, cloning, care-giving
and many other topics. Contact 845-424-4040, murrayt@thehastingscenter.org.
• Pamela
Sankar is an anthropologist and an assistant professor of bioethics at the
University of Pennsylvania and a senior fellow at the Leonard Davis Institute
of Health Economics at the University of Pennsylvania. Sankar's research interests
include medical privacy and confidentiality, ethical and cultural implications
of genetic research, research ethics, and genetics and race. Her current research
project, "Beyond Stigma: Interpreting Genetic Difference," examines the relationship
between genetic conditions, racial and ethnic identities, and stigma. Contact
215-898-7136, sankarp@mail.med.upenn.edu.
• LeRoy
Walters is Joseph P. Kennedy Professor of Christian Ethics and professor
of philosophy at Georgetown University. He has taught at the Kennedy Institute
of Ethics since its founding in 1971. Walters served as director of the institute
from 1996-99 and has written, taught and lectured extensively on ethical issues
in genetic research and gene therapy, stem cell research and cloning, the history
of bioethics, and eugenics and bioethics. He served for three years at the NIH's
Recombinant DNA Advisory Committee, which reviewed gene therapy protocols. Contact
202-687-7174 or 202-687-8099, waltersl@georgetown.edu.
• Paul
Root Wolpe is a senior fellow at the Center for Bioethics at the University
of Pennsylvania. He is first Chief of Bioethics for the National Aeronautics
and Space Administration (NASA), charged with safeguarding research subjects
and astronauts. He is also a professor in the Department of Psychiatry, director
of the Program in Psychiatry and Ethics at the School of Medicine, and Senior
Fellow of the Leonard Davis Institute for Health Economics. He is a member of
Penn's Cancer Center and Center for AIDS research. He is incoming President
of the American Society for Bioethics and Humanities, is an editor of the American
Journal of Bioethics, and has helped found three professional bioethics
societies, two of which deal with issues of religion in bioethics. Contact 215-898-7136,
wolpep@mail.med.upenn.edu.
• Laurie
Zoloth is a professor of medical ethics and humanities and of religion at
Northwestern University's Feinberg School of Medicine and director of the Center
for Genetic Medicine at the university. She is on the national advisory board
of The Robert Wood Johnson's Project on Excellence at the End of Life. She is
past president of the American
Society for Bioethics and Humanities and was a two-term member of the NASA
Advisory Council. She is author of Health Care and the Ethics of Encounter:
A Jewish Discussion of Social Justice (University of North Carolina Press,
1999) and co-editor of Notes from a Narrow Ridge: Religion and Bioethics
(University Publishing Group, 1999) and The Human Embryonic Stem Cell Debate
(MIT, 2001). Contact 312-926-2990, lzoloth@northwestern.edu.
Religious
CHRISTIAN •
Mark
Carr is an associate professor of Christian ethics and director of the Center
for Christian Bioethics at Loma Linda University, a Seventh-day Adventist college
in Loma Linda, Calif. Contact 909-558-4956 or 909-558-1000 ext. 42092, mcarr@llu.edu.
• Richard Doerflinger is the deputy director of the Secretariat for Pro-Life
Activities for the United States Conference of Catholic Bishops. He has written
extensively on Roman Catholic teachings on bioethics and testified before Congress.
Many of his articles are posted on the Pro-Life
Activities bioethics web page. Contact 202-541-3070.
• The Rev. Kevin
T. FitzGerald is a research associate professor at Georgetown University
in Washington, D.C., in the department of oncology. He is also a Jesuit priest
with doctorates in molecular genetics and bioethics. His research efforts in
science focused on the investigation of abnormal gene regulation in cancer and
research on ethical issues in human genetics. He has published both scientific
and ethical articles in books, the popular press and peer-reviewed journals.
FitzGerald has given presentations nationally and internationally on topics
such as human genetic engineering, cloning, stem cell research and the Human
Genome Project. For the past 10 years he has served as an ethics consultant
for the National Society of Genetic Counselors. He is a consultant to the March
of Dimes Ethics Committee and the United States Conference of Catholic Bishops
and is on the advisory committee of the American Association for the Advancement
of Science Dialogue on Science, Ethics and Religion. Contact 202-687-5473, ktf3@georgetown.edu.
• Daniel
McGee is a professor of Christian ethics at Baylor University in Waco, Texas.
His work has focused on the implications of Christian ethics for practical,
familial, institutional and professional life. He has written more than 60 articles
and book chapters dealing with ethics in business, medicine, politics and other
areas. McGee is interested in the applicability of Christian theology to problems
affecting the disenfranchised, relationships between different denominations
and international political problems, particularly those affecting people in
developing nations. Contact 254-710-6316, Daniel_McGee@baylor.edu.
• Gilbert
Meilaender holds the Duesenberg Chair in Christian Ethics at Valparaiso
University in Valparaiso, Ind., and is a member of the President's Council on
Bioethics. He is the author of Bioethics: A Primer for Christians (Eerdmans,
2004) and Body, Soul and Bioethics (University of Notre Dame Press, 1995).
Contact 202-296-4669, gilbert.meilaender@valpo.edu.
• Dr. Edmund
Pellegrino is a professor emeritus of medicine at Georgetown University
Medical Center. He served as director of the Kennedy Institute of Ethics (1983-89)
and the Center for Clinical Bioethics at the medical center (1991-96). He is
chairman of the President's Council on Bioethics. The author of more than 500
publications, he is best-known for his discussions of Christian virtue and medical
ethics in the treatment of patients, humanism and the physician, and the philosophical
basis of medical treatment. He is the founding editor of the Journal of Medicine
and Philosophy. Contact 202-687-5397, pellegre@georgetown.edu.
• Dr. Daniel
Sulmasy is a professor of medicine and director of the Bioethics Institute
of the New York Medical College in Valhalla, N.Y. Sulmasy is a Franciscan friar
and a physician. He also holds a doctorate in philosophy and has expertise in
end-of-life decision-making. He wrote The Rebirth of the Clinic: An Introduction
to Spirituality in Health Care (Georgetown University Press, 2006) and The
Healer's Calling: A Spirituality for Physicians and Other Health Care Professionals
(Paulist Press, 1997). His newest book, A Balm for Gilead: Meditations on
Spirituality and the Healing Arts (Georgetown University Press), is forthcoming
in 2007. Contact daniel_sulmasy@nymc.edu.
• Sister Carol
Taylor is director of the Center for Clinical Bioethics at Georgetown University
in Washington, D.C. She also is a senior research scholar at the Kennedy Institute
of Ethics and an assistant professor of nursing at Georgetown. Her background
is in philosophy, bioethics and nursing. She is experienced in caring for chronically
and critically ill patients and their families and is a clinical ethics consultant
to health-care systems and professional organizations. Contact 202-687-4783,
taylorcr@georgetown.edu.
• Kenneth L. Vaux is a professor of theological ethics at Garrett Evangelical
Theological Seminary of Northwestern University in Evanston, Ill. He has written
about theology and medicine and is the co-author of Dying Well (Abingdon
Press, 1996). Contact 847-866-3887, Ken-Vaux@garrett.edu.
JEWISH
• Dr. Michael "Moshe" Akerman is director of the National Association of
Judaism and Medicine, which examines issues in medical science in light of Jewish
ethical tradition. Contact 866-210-0654.
• Rabbi Elliot Dorff is the rector and co-chairman of the bioethics department
at the University of Judaism in Los Angeles, an undergraduate, graduate and
rabbinical school loosely affiliated with the Conservative movement. Ordained
as a Conservative rabbi, Dorff also has a doctorate in moral theory and has
been instrumental in helping the Conservative movement formulate its Halakhic
(legal) position on human sexuality, infertility treatments and end-of-life
issues. He testified before the National Bioethics Advisory Committee (the body
that preceded the President's Council on Bioethics) on the Jewish tradition's
position on stem cell research and human cloning. He is working on a project
on Judaism and genetics for the American Association for the Advancement of
Science and is a member of its Dialogue on Science, Ethics and Religion Advisory
Committee. He is the author of Matters of Life and Death: A Jewish Approach
to Modern Medical Ethics (Jewish Publication Society, 1998). Contact 310-440-1255,
edorff@uj.edu.
• Aaron Mackler is a theology professor at Duquesne University in Pittsburgh,
Pa., and a Conservative rabbi who has written extensively on health-care ethics,
theological ethics and Jewish theology. He was ethicist for the New York State
Task Force on Life and the Law, where he played a central role in writing reports
on physician-assisted suicide and health-care decision-making. Mackler is a
member of the Conservative Rabbinical Assembly's Committee on Jewish Law and
Standards, for which he is chairman of the subcommittee on biomedical ethics,
and he serves as an ethics committee member for Pittsburgh Mercy Health System.
He authored Introduction to Jewish and Catholic Bioethics: A Comparative
Analysis (Georgetown University Press, 2003), edited Life and Death Responsibilities
in Jewish Biomedical Ethics (Jewish Theological Seminary of America, 2000),
and has written many articles in scholarly and professional journals. Contact
412-396-6530, mackler@duq.edu.
• Dr. Edward Reichman is a professor of emergency medicine at Montefiore
Medical Center and assistant professor of philosophy and history of medicine
at Albert Einstein College of Medicine in the Bronx, N.Y., where he teaches
Jewish medical ethics. An ordained Orthodox rabbi, Reichman speaks and writes
about all areas of Jewish medical ethics, including organ donation, assisted
reproduction, and stem cell research. He is a member of the board of the Halachic
Organ Donor Society, a largely Orthodox group of physicians and rabbis that
strongly advocates organ donation in opposition to the traditional misconception
that Judaism discourages it. He also serves on the advisory board of the Institute
for Genetics and Public Policy. His research is devoted to the interface of
medical history and Jewish law. Contact 718-920-6626, ereichma@montefiore.org.
• Laurie
Zoloth is a professor of medical ethics and humanities and of religion at
Northwestern University's Feinberg School of Medicine and director of the Center
of Bioethics, Science and Society at the university. Her current research includes
the complexities of basic and applied research and policy, the areas of synthetic
biology, nanoscience, neuroscience, genomics, genetics and stem cells. She is
also interested in the broader topic of social justice and poverty. In this
research, and in her research on the American health care system, she draws
on her scholarly interest in distributive justice. In 2001, she was named principal
investigator for the International Project on Judaism and Genetics. She is past
president of the American Society
for Bioethics and Humanities and was a two-term member of the NASA
Advisory Council. She is author of Health Care and the Ethics of Encounter:
A Jewish Discussion of Social Justice (University of North Carolina Press,
1999) and co-editor of Notes from a Narrow Ridge: Religion and Bioethics
(University Publishing Group, 1999) and The Human Embryonic Stem Cell Debate
(MIT, 2001). Contact 312-926-2990, lzoloth@northwestern.edu.
MUSLIM • Khaleel Mohammed is an associate professor of religion at San Diego
State University who specializes in Islam, Islamic law and comparative religion.
He teaches courses in world religions, the Quran, sex and gender in Islam, and
Islamic bioethics. He has been trained as a jurist in both the Sunni and Shiite
schools and posts his writings on his web site, For
People Who Think. Contact 619-594-3108, khaleel.mohammed@sdsu.edu.
• Abdulaziz A. Sachedina is a coordinator of the Islamic bioethics group
of the International Association of Bioethics and is a professor of Islamic
and Shiite studies at the University of Virginia in Charlottesville. He wrote
the article "Human Clones: An Islamic View" for the book The Human Cloning
Debate (Berkeley Hills Books, 2002). He also contributed the entry "Bioethics"
for The Oxford Dictionary of Islam (Oxford University Press, 2002). Contact
434-924-6725, Sachedina@virginia.edu.
HINDU
• S. Cromwell Crawford is a professor and chairman of the religion department
at the University of Hawaii at Manoa and the author of Hindu Bioethics for
the 21st Century (State University of New York Press, 2003). He commends
President Bush for appointing advisers to help him with bioethics but worries
that eliminating dissenters undercuts the effort. He believes that members of
religions are free to express their views on biomedical legislation, but government
policies should seek to serve the entire community. Contact 808-956-4200, scrawfor@hawaii.edu
or Szabocrawf@aol.com.
BUDDHIST
• Damien Keown is professor of Buddhist ethics at Goldsmiths College, University
of London. He is the author of the Nature of Buddhist Ethics (Palgrave
Macmillan, 2001), Buddhism and Bioethics (University of Chicago, 1997),
The Oxford Dictionary of Buddhism (Oxford University Press, 2004) and
many other publications. He is founding co-editor of the Journal of Buddhist
Ethics and the Routledge Critical Studies in Buddhism Series. Contact
d.keown@gold.ac.uk.
• George J. Tanabe Jr. is a religion professor at the University of Hawaii
at Manoa. He is an expert on Japanese Buddhism and the author of an article
on abortion in the Encyclopedia of Buddhism (Macmillan, 2004). Contact
808-956-4204, gtanabe@hawaii.edu.
• Karma Lekshe
Tsomo is an assistant professor of religion at the University of San Diego
who teaches Buddhist ethics, feminist ethics, bioethics (abortion, euthanasia,
organ transplantation) and the ethics of war and peace. She is president of
Sakyadhita: The International
Association of Buddhist Women and director of Jamyang
Foundation, an initiative to provide educational opportunities for women
in the Indian Himalayas. Contact 619-260-4600, ktsomo@sandiego.edu.
Background
GENERAL • Read "Bioethics
for beginners" and four articles
on urgent issues in genetics and bioethics, both posted by bioethics.net.
• Read
an introduction to bioethics and a selection of articles about issues in bioethics,
genetic engineering, stem cells and cloning on the Pew
Forum web site.
• The
President's Council
on Bioethics posts an overview of current issues in bioethics, selections
from papers, transcripts, reports and background material from bioethics experts
(not only those on the council) on 18 topics of concern to the council. It also
posts background
on the debate over organ transplantation.
• The Project
on Death in America seeks to transform the culture of dying by supporting
initiatives in research, scholarship, the humanities and the arts, and by fostering
innovation in the provision of care, public and professional education, and
public policy. It is a major funder of research on death, dying and palliative
care.
• New York University's Medical
Humanities web site has a literature, arts and medicine database that is
an annotated bioethics bibliography of prose, poetry, film, video and art.
• The University of Washington Ethics
in Medicine web site covers many bioethics topics in detail for professionals,
including medical futility, prenatal diagnosis, confidentiality, advance directives,
neonatal intensive care unit issues, informed consent, spirituality and medicine,
HIV/AIDS and termination of treatment.
• Genome
News Network posts articles on a range of bioethics topics; links to landmark
documents, religious views and the U.S. government's views on various issues;
and a timeline on genetics and genomics. The Genome News Network is an educational
web site affiliated with and editorially independent from The
Institute for Genomic Research in Rockville, Md., the organization that
beat the National Institutes of Health to first sequence the human genome in
the 1990s.
• Read
about The Bloodlines Project, Bloodlines:
Technology Hits Home, which includes a one-hour PBS documentary, an
interactive web site, outreach and a guide about how new life-sciences technologies
are raising ethical, legal and social dilemmas as cutting-edge science intersects
with the law. What does it mean to be a parent? To be human? To have rights?
The Bloodlines Project explains what is at stake when public policy trails behind
medical science.
GENETIC
ENGINEERING • Read an introduction
to genetic engineering for nonscientists, posted by DNAPatent.com.
• Read
cautionary
essays on the putative dangers of genetic engineering from the points of
view of science, religion, politics and philosophy, with links to resources
and a bibliography. The information was compiled by Ron Epstein, professor emeritus
of philosophy at San Francisco State University.
OTHER
ISSUES •
Read about end-of-life issues from the University of Washington in Seattle's
Ethics
in Medicine program and the National
Institutes of Health.
• Read an article
on Islamic bioethics from 2001 in the Canadian Medical Association Journal,
by A. Daar and A. Khitamy of Sultan Qaboos University in Oman.
• Read an overview
of neuroethics issues from the University of Pennsylvania Center for Bioethics.
• Read
three views on xenotransplantation, from the Campaign
for Responsible Transplantation, the Vatican,
and the Secretary's
Advisory Committee on Xenotransplantation. The last site, from the Office
of Biotechnology Activities National Institutes of Health, contains many documents
about the worldwide and U.S. debate on using animal tissues for human transplantation.
• Read
a 1999
New Yorker article about the highly controversial views of Peter
Singer of Princeton University. Singer is a philosopher who applies a utilitarian
approach to bioethics, and his ideas on infanticide, animal rights, euthanasia
and rights of the disabled challenge much thinking in mainstream bioethics.
• Read
a series
of Washington Post articles about the 1999 gene therapy trial and
death of Jesse Gelsinger, and what has happened since in the field.
