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Ethical Issues in Umbilical Cord Blood Banking
Jeremy Sugarman, MD, MPH, MA;
Valerie Kaalund, PhD;
Eric Kodish, MD;
Mary Faith Marshall, PhD;
Emily G. Reisner, PhD;
Benjamin S. Wilfond, MD;
Paul Root Wolpe, PhD
JAMA. 1997;278(11):938-943.
Abstract
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Objective.
—Banking umbilical cord blood (UCB) to be used as a source of stem cells for transplantation is associated with a set of ethical issues. An examination of these issues is needed to inform public policy and to raise the awareness of prospective parents, clinicians, and investigators.
Participants.
—Individuals with expertise in anthropology, blood banking, bone marrow transplantation, ethics, law, obstetrics, pediatrics, and the social sciences were invited to join the Working Group on Ethical Issues in Umbilical Cord Blood Banking.
Evidence.
—Members were assigned topics to present to the Working Group. Following independent reviews, background materials were sent to the Working Group.
Consensus Process.
—Individual presentations of topics at a 2-day meeting were followed by extensive group discussions in which consensus emerged. A writing committee then drafted a document that was circulated to the entire Working Group. After 3 rounds of comments over several months, all but 1 member of the Working Group agreed with the presentation of our conclusions.
Conclusions.
—(1) Umbilical cord blood technology is promising although it has several investigational aspects; (2) during this investigational phase, secure linkage should be maintained of stored UCB to the identity of the donor; (3) UCB banking for autologous use is associated with even greater uncertainty than banking for allogeneic use; (4) marketing practices for UCB banking in the private sector need close attention; (5) more data are needed to ensure that recruitment for banking and use of UCB are equitable; and (6) the process of obtaining informed consent for collection of UCB should begin before labor and delivery.
Author Affiliations
and the Working Group on Ethical Issues in Umbilical Cord Blood Banking
From the Division of General Internal Medicine, Center for the Study of Aging and Human Development, Center for Health Policy Research and Education, Duke University (Dr Sugarman) and HLA Laboratory, Duke University Medical Center (Dr Reisner), Durham, NC; African and Afro-American Studies, University of North Carolina, Chapel Hill (Dr Kaalund); Center for Biomedical Ethics, Case Western Reserve University School of Medicine, Cleveland, Ohio (Dr Kodish); Program in Bioethics, Medical University of South Carolina, Charleston (Dr Marshall); Department of Pediatrics, University of Arizona, Tucson (Dr Wilfond); and the Center for Bioethics, University of Pennsylvania, Philadelphia (Dr Wolpe).
Footnotes
The views of Liana Harvath, PhD, of the Working Group on Ethical Issues in Umbilical Cord Blood Banking represent scientific opinion and should not be construed as opinion or policy of the US Food and Drug Administration.
A complete list of participants in the Working Group on Ethical Issues in Umbilical Cord Blood Banking appears at the end of this article.
Reprints: Jeremy Sugarman, MD, MPH, MA, Division of General Internal Medicine, Box 3040, Duke University Medical Center, Durham, NC 27710.
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