The 25th Anniversary of the Baby Doe Rules: Perspectives from the Fields of Law, Health Care, Ethics, and Disability Policy

A highly publicized and controversial case involving the withholding of medical treatment from a “Baby Doe” with Down syndrome gave rise in 1984 to the federal law known as the Baby Doe Rules, which went into effect the following year. The law conditions the grant of federal funds for any state’s child protective services program on the state’s assurance that it can respond to reports of medical neglect, which may include the withholding of medical treatment from disabled infants with life-threatening conditions. Leading scholars and practitioners from the fields of health care, law, ethics, and disability policy who are experts in the field of neonatal medicine and decision-making involving very premature and other medically at-risk infants gathered to provide thoughtful commentary and debate on the occasion of the 25th Anniversary of the Baby Doe Rules. The Georgia State University Law Review will publish a symposium volume on the topic in Fall 2009

The 25th Anniversary of the Baby Doe Rules: Perspectives from the Fields of Law, Health Care, Ethics, and Disability Policy

A highly publicized and controversial case involving the withholding of medical treatment from a “Baby Doe” with Down syndrome gave rise in 1984 to the federal law known as the Baby Doe Rules, which went into effect the following year. The law conditions the grant of federal funds for any state’s child protective services program on the state’s assurance that it can respond to reports of medical neglect, which may include the withholding of medical treatment from disabled infants with life-threatening conditions. Leading scholars and practitioners from the fields of health care, law, ethics, and disability policy who are experts in the field of neonatal medicine and decision-making involving very premature and other medically at-risk infants gathered to provide thoughtful commentary and debate on the occasion of the 25th Anniversary of the Baby Doe Rules. The Georgia State University Law Review will publish a symposium volume on the topic in Fall 2009

Oral History of Loretta M. Kopelman

This interview with Loretta M. Kopelman, PhD, was conducted by Suzanne Snider on February 8, February 9, and March 4, 2023 in McLean, Virginia as part of Moral Histories: Voices and Stories from the Founding Figures of Bioethics, an oral history project of the Johns Hopkins Berman Institute of Bioethics. Prof. Kopelman is the Adjunct Professor of Family Medicine at Georgetown University Medical Center and Professor Emeritus at the Brody School of Medicine at East Carolina University. She was founding president of the American Society for Bioethics and Humanities (ASBH) and president of the Society for Health and Human Values (SHHV). Prof. Kopelman’s areas of expertise include research policy, ethics of human subjects research, research on children, and resource allocation.On Day 1 of the interview, Prof. Kopelman describes being raised in Queens, New York on the grounds of Creedmoor State Hospital, where her father was a psychiatrist. She reflects on her relationships and interactions on the hospital grounds as an early influence on her attention to patient care. Prof. Kopelman describes her undergraduate education at Syracuse University including her pivots from social work to psychology, and ultimately, to philosophy, which she first encountered through Descartes’ Meditations on First Philosophy. She went on to earn a PhD in philosophy at the University of Rochester. One of the few women in her graduate program, Prof. Kopelman describes her experiences of sexism while in graduate school.On Day 2, Prof. Kopelman spends substantial time describing the establishment of the American Society for Bioethics and Humanities (ASBH) in 1998, of which she served as founding president. Prof. Kopelman highlights notable tensions during the discussions that led to the ASBH’s founding. She tells a story of ASBH negotiating whether the organization should take stands on bioethics issues. Prof. Kopelman speaks about the flaws of the so-called Baby Doe regulations and contrasts them with the best interest standard. She describes her lifelong advocacy for ethically responsible research involving children.Prof. Kopelman discusses ethical questions related to different cultural practices, telling a story about forced marriage and comparative laws around child abuse protection in the UK. Prof. Kopelman describes Bioethics Summer Camp (started by Art Caplan in the 1990s) and developing close relationships with Baruch Brody and Marian Gray Secundy while there. She describes serving on a FDA panel evaluating the use of fentanyl as anesthesia for children and challenging the doctors from top institutions, citing this as part of her ethos: asking probing questions to get to the core of an issue. Prof. Kopelman reflects on the growth of bioethics and its increasing engagement with other disciplines, positing that this broadening is making bioethics a better field. Please note: Due to a significant loss of audio recorded on Day 1 and the project team's efforts to recover that lost material on Day 3, listeners may note thematic overlap between Day 3 and the previous two sessions, including discussions of the Baby Doe regulations, savior siblings, Jay Katz, and a growth hormone study.On interview Day 3, Prof. Kopelman describes: her interest in philosopher David Hume and his work on moral decisions; psychiatrist Stanley Walzer’s XXY syndrome study; bioethics as a second order discipline; and the case of Elizabeth Bouvia and end-of-life issues. Prof. Kopelman describes being recruited to the newly-formed East Carolina University School of Medicine and designing the medical humanities department there, where she became its first chair. She reflects on teaching ethics in medical school settings and the benefit of using literature as a teaching tool in both philosophy and medical humanities. Prof. Kopelman speaks in considerable depth about the 1990s NIH study which researched the effects of human growth hormone in children. Prof. Kopelman also speaks to her friendship with Jay Katz and the influence of his work around informed consent.This interview may be of interest to those seeking to learn more about: the field of bioethics and the history of bioethics in the US; gender justice; best interest standard and the Baby Doe regulations; philosophy; ethics across cultural practice; bioethics and interdisciplinarity; children as research subjects; bioethics and the humanities; experiences of founding bioethics departments in medical schools; and regional histories of bioethics (mid-Atlantic and New York State).Note about Day 1, File 3 audio: Due to technical difficulties faced by the production company and recordist, several hours of recorded audio were lost. The audio on this file terminates at time code 00:15:25. All efforts were made to review material recorded on Day 1 during an additional session scheduled a month later