APRIL 14, 2008

BIOETHICS
A guide to beginning-of-life issues

The earliest stages of the development of human beings, from conception through the period shortly after birth, are fraught with life-and-death issues. Whether concerned about the fate or welfare of a particular embryo, fetus or baby, or hoping to benefit from a reproductive technology or stem cell research, countless individuals and families in every part of the nation face difficult questions every day. Americans hold a wide range of ethical and religious opinions about beginning-of-life questions, and various religious denominations disagree, often sharply and vociferously, about the correct course of action in given cases. These disagreements arise because major religious traditions differ profoundly on the moral status of life before birth and even on the terminology that is appropriate to use in referring to it. For example, biological terminology uses the term embryo for the first eight weeks after conception and fetus from then until birth. Depending on their frame of reference, some people use these terms in nontechnical discussions and others do not, preferring to speak of a baby from the time of conception.

Because these disagreements are significant and often deeply felt, issues dealing with life before birth tend to be highly controversial. Further changes in the technologies involving stem cell research, genetic diagnosis, assisted reproduction, and the birth and care of extremely premature infants or ones with severe birth defects will only raise additional contentious questions. These issues are most often played out in real-life medical settings, and decisions concerning particular cases and circumstances are often made in the public arena, with the policies of government entities, insurance companies, and health care providers and institutions coming into play, along with those of various religious groups.

Americans sometimes confront these issues as individuals and family members – for example, when they are affected by infertility, a troubled pregnancy, an extremely premature birth, severe birth defects in a newborn, or when they or a relative suffer from a disease, such as Parkinson’s or Type I diabetes, that might be helped by treatments using stem cells. Americans also deal with these issues as citizens when they attempt to influence law or public policy to reflect their views on the issue.

How to use this guide

This guide begins by outlining major beginning-of-life issues, then divides sources into two categories – national sources and organizations. While many of the experts listed here can address abortion, abortion is not a significant part of this source guide because there are so many experts and organizations that focus on that one issue. ReligionLink plans to provide a source guide on abortion in the future.

Click the map for interview sources in your state and region

If you would like to be added to this source listing or request a change in the information, please email bioethics@religionlink.org. If you are requesting a change in the wording of your listing, please state the reason for the change. ReligionLink reserves the right to decide which listings to include.
• For organizations, include the name, mission, Web site and a contact name with phone number and email. Also include any specific areas of interest and expertise.
• For individuals, include name, title, organization, Web site, areas of expertise, phone number and email.

MAJOR BEGINNING-OF-LIFE ISSUES

The moral status of human life before birth. Although none dispute that, in a biological sense, the embryo is alive and has a distinct genetic identity from the moment of conception, major religious traditions differ on the moral status they accord to the embryo and fetus. This profoundly influences the attitudes that they take toward many technologies and techniques. Some traditions, especially Roman Catholicism and some other Christian denominations, believe that the embryo has the status of a full human person from the moment of conception. Others, including Islam and Judaism, recognize that the embryo and fetus have the potential for full human life, which they hold in reverence, but do not accord parity with people who have been born. Some Christians share this view. Others believe that human status begins at some intermediate point, as, for example, when the fertilized ovum implants in the uterus or when the fetus is considered capable of viability outside the womb. Within a number of larger religious traditions, furthermore, differences exist in interpretation of the group’s larger orientation toward the moral status before birth.

Embryonic stem cell research. The moral status accorded to the embryo and fetus profoundly affects how various traditions view specific techniques and technologies, such as research on stem cells derived from embryos, which some religious groups encourage as a potentially valuable health measure and others reject as homicide.

Assisted reproduction. Religious traditions differ in their attitude toward techniques to assist reproduction that involve creation or manipulation of embryos or use of donor eggs or sperm. Some approve these methods and others forbid them.

Cloning of human embryos. Faith communities in the United States universally reject cloning of embryos for the purpose of producing human beings who will be born. Some however, accept cloning for the purpose of producing products, such as stem cells, for use in medical treatment, a process known as therapeutic cloning, while others categorically reject the practice.

Conflict between the welfare of the mother and of the pregnancy. Pregnancy can present medical issues in which the health or welfare of the mother is at odds with those of the pregnancy or of the embryo or fetus, such as when the mother has or develops a condition that makes the pregnancy or birth a threat to her health or life. Sometimes saving a problematic pregnancy also can require treatments that may be detrimental to the mother. Religious traditions differ on how to weigh the conflicting interests in such cases. Some, particularly some Christian denominations, believe that the interests of the embryo or fetus are paramount most or all of the time. Others, such as Judaism, believe that the life of the mother should take precedence throughout the pregnancy and birth.

Prenatal diagnosis and resultant abortion. Genetic and other technologies permit diagnosis of various diseases and conditions that can threaten the life, health or normal development of the future baby. This leads to the question of whether to terminate the pregnancy to forestall the suffering of the child and the family if the child is born. Some traditions forbid termination and therefore may encourage expectant parents to forgo prenatal testing. Others permit or even encourage these practices in order to spare a baby and family from suffering a grave or inevitably fatal disease.

Decisions regarding the birth and care of extremely premature babies or those with severe birth defects. Babies born extremely premature or with severe birth defects have a high likelihood of dying, and, should they survive, of suffering severe ailments or disabilities. Heroic neonatal intensive care techniques are often capable of keeping such babies alive, but, in many cases, without the assurance or possibility of anything close to normal development. The type and degree of care that should be given to a child whose extreme immaturity or birth defects are likely to result in major suffering are extremely controversial, both among and within religious groups and within the medical community. In many cases, the principles and considerations appropriate to end-of-life care become relevant, but with the complication that the patient is unable to express a preference.

National sources

For related sources, please see ReligionLink’s
• Guide to bioethics experts
• Guide end-of-life issues

• Rebecca Rae Anderson is associate professor of health promotion, social and behavioral health sciences at the University of Nebraska Medical Center in Omaha.  She is a board-certified genetic counselor, a member of the Social, Ethical, Legal Issues Committee of the American College of Medical Genetics and the author of Religious Traditions and Prenatal Genetic Counseling. Contact 402-559-1997, randerso@unmc.edu.
• Renee R. Anspach is an associate professor of sociology at the University of Michigan in Ann Arbor and author of Deciding Who Lives: Fateful Choices in the Intensive-Care Nursery. Contact 734-763-0439, ranspach@umich.edu.
• Rabbi J. David Bleich is Herbert and Florence Tenzer Professor of Jewish Law and Ethics at Cardozo Law School of Yeshiva University in New York City. He is the co-author of Jewish Bioethics and author of Bioethical Dilemmas: A Jewish Perspective. Contact 212-790-0294, bleich@yu.edu.
• Rabbi Michael J. Broyde is a law professor at Emory University School of Law in Atlanta and academic director of Emory’s Law and Religion Program. His primary areas of interest are law and religion, Jewish law and ethics, and comparative religious law. His writings include “Cloning People: A Jewish Law Analysis of the Issues” in the Connecticut Law Review (1998) and “Pre-implantation Genetic Diagnosis, Stem Cells and Jewish Law” in Tradition: A Journal of Orthodox Jewish Thought. Contact 404-727-7546, mbroyde@law.emory.edu.
• R. Alta Charo is Warren P. Knowles Professor of Law & Bioethics at the University of Wisconsin Law School in Madison. She was a member of President Clinton’s National Bioethics Advisory Commission, where she participated in drafting its reports on cloning human beings. Contact 608-262-5015, racharo@wisc.edu.
• Peter A. Clark is professor of theology and health administration, holder of the John McShain Chair in Ethics and director of the Institute of Catholic Bioethics at St. Joseph’s University in Philadelphia. He is a Catholic priest, an affiliated scholar-associate at the Center for Clinical Bioethics at Georgetown University Medical Center and bioethicist for the Mercy Health System in Philadelphia. He wrote To Treat or Not to Treat: The Ethical Methodology Of Richard A. McCormick, S.J., As Applied to Treatment Decisions for Handicapped Newborns. Contact 610-660-1867, pclark@sju.edu.
• Ronald Cole-Turner is H. Parker Sharp Professor of Theology and Ethics at Pittsburgh Theological Seminary, author of The New Genesis: Theology and the Genetic Revolution and co-author of Pastoral Genetics: Theology and Care at the Beginning of Life. Contact 412-441-3304 ext. 2170, coleturn@pts.edu.
• Marilyn E. Coors is assistant professor of bioethics and genetics in the department of psychiatry at the University of Colorado at Denver and Health Sciences Center. She is the author of the book The Matrix: Charting the Ethics of Inheritable Genetic Modification and of “Therapeutic Cloning: From Consequences to Contradiction” in the June 2002 edition of The Journal of Medicine and Philosophy. Contact 303-315-0203, Marilyn.Coors@uchsc.edu.
• Dena Davis is a law professor at Cleveland-Marshall College of Law at Cleveland State University in Cleveland. She also has an adjunct appointment at Case Western Reserve University’s department of biomedical ethics. She is co-author of Notes From a Narrow Ridge: Religion and Bioethics and author of Genetic Dilemmas: Reproductive Technology, Parental Choices and Children’s Futures. Contact 216-687-2312, dena.davis@law.csuohio.edu.
• David Dion DeGrazia is a philosophy professor at George Washington University in Washington, D.C. He is the author of the book Human Identity and Bioethics and of “Moral Status, Human Identity and Early Embryos: A Critique of the President’s Approach” in the spring 2006 edition of The Journal of Law, Medicine & Ethics. Contact 202-994-6913, ddd@gwu.edu.
• Jacqueline J. Glover is an associate professor in the departments of pediatrics and preventive medicine and biometrics at the University of Colorado at Denver and Health Sciences Center. She is also an associate professor in the Center for Bioethics and Humanities, where she directs the center’s clinical ethics program and the interdisciplinary education program. She is co-author of “Ethical issues in treating infants with very low birth weight,” in the May 2000 issue of Seminars in Pediatric Surgery. Contact 303-315-6093, Jackie.Glover@uchsc.edu.
• Frank Gonzalez-Crussi was formerly head of laboratories at Chicago’s Children’s Memorial Hospital and professor of pathology at Northwestern Medical School. His books include On Being Born and Other Difficulties. Contact through Writers’ Representatives LLC, 212-620-0023.
• Henry T. Greely is Deane F. and Kate Edelman Johnson Professor of Law at Stanford University in Stanford, Calif. He chairs the California Advisory Committee on Human Embryonic Stem Cell Research and the steering committee for the Stanford Center for Biomedical Ethics. He is also director of the Center for Law and the Biosciences and the Stanford Center for Biomedical Ethics’ Program on Stem Cells in Society. Contact 650-723-2517, hgreely@stanford.edu.
• Ruth Levy Guyer is a visiting professor teaching courses in bioethics at Haverford College in Haverford, Pa., and the author of Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families and Society (2007). Contact 610-896-1388, rguyer@haverford.edu.
• Dr. John Lantos is professor of pediatrics and associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. He is co-author of Neonatal Bioethics: The Moral Challenges of Medical Innovation and author of The Lazarus Case: Life-and-Death Issues in Neonatal Intensive Care. Contact 773-702-6700, jlantos@peds.bsd.uchicago.edu.
• Dr. Steven R. Leuthner is associate professor of pediatrics and bioethics at the Health Policy Institute of the Wisconsin College of Medicine in Milwaukee. He is the author of “Decisions Regarding Resuscitation of the Extremely Premature Infant and Models of Best Interest” in the April/May 2001 Journal of Perinatology and co-author of “End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service” in the journal Pediatrics (September 2001), “The Ethics of Withholding/Withdrawing Nutrition in the Newborn” in Seminars in Perinatology (December 2003) and “Palliative Care of the Infant with Lethal Anomalies” in the journal Pediatric Clinics of North America (2004). Contact 414-266-6706, Leuthner@mcw.edu.
• Ruth Macklin is a bioethics professor in the department of epidemiology and population medicine at the Albert Einstein College of Medicine in the Bronx, N.Y. She is the author of Surrogates & Other Mothers: The Debates Over Assisted Reproduction. Contact 718-430- 3574, Macklin@aecom.yu.edu.
• Mary Briody Mahowald is professor emerita of obstetrics and gynecology and a faculty member at the MacLean Center for Clinical Medical Ethics at the University of Chicago. Her books include Women and Children in Health Care: An Unequal Majority and Bioethics and Women: Across the Life Span. Contact 737-702-9300, mm46@uchicago.edu.
• Mary Anderlik Majumder is assistant professor of medicine with the Center for Medical Ethics and Health Policy at Baylor College of Medicine.  She is co-editor of Genetic Ties and the Family: The Impact of Paternity Testing on Parents and Children. Contact713-798-3511, majumder@bcm.edu.
• Laurence B. McCullough is professor of medicine and medical ethics and a core faculty member at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston.  He is the author of “Neonatal Ethics at the Limits of Viability” in the October 2005 issue of the journal Pediatrics and is co-author of the book Ethics in Obstetrics and Gynecology. Contact 713-798-3505, mccullou@bcm.tmc.edu.
• Glenn McGee holds the John A. Balint Endowed Chair in Medical Ethics and is a professor of medicine and director of the Alden March Bioethics Institute at Albany Medical College in New York state. He is the author of The Perfect Baby: A Pragmatic Approach to Genetics and editor of Who Owns Life? and The Human Cloning Debate. Contact 518-262-6082, glenn.mcgee@bioethics.net.
• Dr. William Meadow is professor of pediatrics, assistant director of the McLean Center for Clinical Medical Ethics at the University of Chicago and co-author of Neonatal Bioethics: The Moral Challenges of Medical Innovation. Contact 773-702-6210, wlm1@uchicago.edu.
• Maxwell Mehlman is professor of bioethics and professor of law at Case Western Reserve University School of Medicine in Cleveland. He is co-author of Genetics: Ethics, Law and Policy and author of Wondergenes: Genetic Enhancement and the Future of Society. Contact 216-368-3983, mjm10@case.edu.
• Dr. Geoffrey Miller is professor of pediatrics and neurology at Yale University in New Haven, Conn. He wrote Extreme Prematurity: Practices, Bioethics and the Law (2007). Contact 203-785-5708, geoffrey.miller@yale.edu.
• Thomas H. Murray is president of The Hastings Center. He is author of The Worth of a Child and co-editor of the Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology and Genetic Ties and the Family: The Impact of Paternity Testing on Parents and Children. Contact 845-424-4040 ext. 201, murrayt@thehastingscenter.org.
• Dr. Robert D. Orr is professor of bioethics at The Union Graduate College-Mount Sinai School of Medicine Bioethics Program, professor of family medicine at the University of Vermont College of Medicine and clinical ethicist at Fletcher Allen Health Care in Burlington, Vt. He has been vice president of the American Society for Bioethics and the Humanities. Contact 802-847-2000, b.j.orr@comcast.net.
• Winifred J. Ellenchild Pinch is a professor at the Center for Health Policy and Ethics and professor of nursing at Creighton University in Omaha, Neb.  She wrote When the Bough Breaks: Parental Perceptions of Ethical Decision-Making in NICU. Contact 402-280-2042, wpinch@creighton.edu.
• Rabbi Avram Reisner is adjunct professor of Rabbinics at Baltimore Hebrew University. He is a member of the Committee on Jewish Law and Standards of the Rabbinical Assembly and of its Subcommittee on Biomedical Ethics, and he wrote “Peri- and Neo-Natology: The Matter of Limiting Treatment.” Contact 410-578-6900, avramreisner@netscape.net.
• John A. Robertson holds the Vinson & Elkins Chair at the University of Texas School of Law at Austin. His books include The Rights of the Critically Ill and Children of Choice: Freedom and the New Reproductive Technologies. He is chairman of the Ethics Committee of the American Society for Reproductive Medicine. Contact 512-232-1307, jrobertson@mail.law.utexas.edu.
• Bonnie Steinbock is a philosophy professor at the University at Albany, State University of New York. She is also a faculty member of the Alden March Bioethics Institute at Albany Medical College and the Union Graduate College-Mount Sinai School of Medicine bioethics program. Steinbock wrote Life Before Birth: The Moral and Legal Status of Embryos and Fetuses, and she edited Legal and Ethical Issues in Human Reproduction and The Oxford Handbook of Bioethics (2007). Contact 518-442-4262, steinbock@albany.edu.
• Carson Strong is professor of human values and ethics at the University of Tennessee College of Medicine in Memphis. He wrote Ethics in Reproductive and Perinatal Medicine: A New Framework. Contact 901-448-5700, cstrong@utmem.edu.
• Carol Tauer is professor of philosophy emerita at the College of St. Catherine in St. Paul, Minn., and is currently visiting professor at the Center for Bioethics of the University of Minnesota. She served on the National Institutes of Health’s Human Embryo Research Panel, which made ethical recommendations for federal funding of research on infertility, pre-implantation diagnosis and stem cell research, and on the Committee on Ethics of the American College of Obstetricians and Gynecologists. Contact 612-625-1610, tauer007@umn.edu.
• Dr. Jon E. Tyson is a professor of pediatrics and director of the Center for Clinical Research and Evidence-Based Medicine at the University of Texas Medical School at Houston. He is the author of “Evidence-Based Ethics and the Care of Premature Infants” in the spring 1995 issue of the journal The Future of Children. Contact 713-500-5651, Jon.E.Tyson@uth.tmc.edu.

ORGANIZATIONS

Major bioethics centers

See linked lists of bioethics centers from:
• The American Medical Association
• The National Reference Center for Bioethics Literature (searchable by state)
• The University of Chicago’s Division of Bioethical Sciences

Georgetown University is the nation’s oldest Catholic and Jesuit university. A pioneering bioethics institution, Georgetown has trained many of the most pre-eminent contemporary bioethicists. It is home to:
• the Kennedy Institute of Ethics, the oldest academic bioethics center (see its scholars);
• the National Bioethics Library;
• the National Reference Center for Bioethics Literature, the world’s largest collection of information on biomedical ethics;
• The National Information Resource on Ethics and Human Genetics, funded by the National Human Genome Research Institute of the National Institutes of Health;
• The Center for Clinical Bioethics, established in 1991 at Georgetown University Medical Center as a university-based bioethics resource for those who shape and give health care. Contact 202-687-0100.

• The Hastings Center, an independent research institution in Garrison, N.Y., is a national leader in research into ethical issues in all aspects of health care. Deputy director Nancy Berlinger is an expert in end-of-life issues. Contact press officer Gregory Kaebnick, 845-424-4040 ext. 227, kaebnickg@thehastingscenter.org.
• 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 U.S. Public Health Service’s syphilis study conducted at Tuskegee, 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 Center for Bioethics has 15 full- and part-time faculty. Associate Director Dianne Bartels is an expert in end-of-life care issues. Contact the center, 612-624-9440, bioethx@umn.edu.
• The University of Pennsylvania Center for Bioethics in Philadelphia is the pre-eminent bioethics center in the United States, with more than 20 faculty members, 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.