Ethical Issues in Umbilical Cord Blood Banking
Marshall, Mary Faith
Reisner, Emily G.
Wilfond, Benjamin S.
Wolpe, Paul Root
JAMA. 1997 Sep 17; 278(11): 938-943.
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.
Advertising; Anthropology; Biomedical Research; Blood; Blood Banks; Blood Donation; Bone Marrow; Cells; Computers; Confidentiality; Consensus; Cord Blood; Costs and Benefits; Computer Security; Consent; Deception; Directed Donation; Disclosure; Donors; Ethics; Federal Government; Financial Support; Government; Government Regulation; Human Experimentation; Industry; Informed Consent; Investigational Therapies; Investigators; Justice; Law; Marketing; Minority Groups; Moral Obligations; Newborns; Parental Consent; Parents; Pediatrics; Pregnant Women; Privacy; Private Sector; Public Policy; Records; Regulation; Research; Resource Allocation; Review; Risks and Benefits; Selection for Treatment; Social Sciences; Standards; Stem Cells; Technology; Tissue Transplantation; Transplantation; Uncertainty;
Working Group on Ethical Issues in Umbilical Cord Blood Banking
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Sugarman, Jeremy; Kaalund, Valerie; Kodish, Eric; Marshall, Mary Faith; Reisner, Emily G.; Wilfond, Benjamin S.; Wolpe, Paul Root (Working Group on Ethical Issues in Umbilical Cord Blood Banking [supported by Duke University, Kenan Program in Ethics and the Cannon Foundation], 1997-09-17)