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December 13, 1995

Research and Stored TissuesPersons as Sources, Samples as Persons?

Author Affiliations

From the Public Law Research Center (CROP), Université de Montréal, Québec (Dr Knoppers), and Departments of Medicine and Pediatrics, Laval (Québec) University Medical Center (Dr Laberge). Dr Knoppers chairs the Medical, Ethical, Legal, and Social Issues Committee for the Canadian Genome Technology Assessment Program, chairs the Social Issues Committee for the American Society of Human Genetics, and is a member of the Human Genome Organisation international ethics committee and the United Nations Educational, Scientific, and Cultural Organization international ethics committee. Dr Laberge is president of the Québec Network of Applied Genetic Medicine and cochair of the Genetics Unit of the Applied Clinical Ethics Network (Québec Health Research Fund).

JAMA. 1995;274(22):1806-1807. doi:10.1001/jama.1995.03530220072037

While the debate surrounding the status of human organs, gametes, embryos, tissues, blood, and cells (property? person? gift? waste?) continues, the issues surrounding the storage and possible current and future uses of such "materials" need to be addressed. The comprehensive and sensitive articles—"Informed Consent for Genetic Research on Stored Tissue Samples" by Clayton et al1 and "Ethical Aspects of Banking Placental Blood for Bone Marrow Transplantation" by Sugarman et al2—epitomize the complexity of the underlying ethical, legal, and social problems. Donors, patients, and research participants everywhere have become "sources."1 Hence, the need for discussion and clarification.

See also pp 1783 and 1786.

Even though the article by Sugarman et al2 seemingly focuses on a narrower topic, the ethical issues raised—ownership, informed consent, privacy, confidentiality, and access— are common to both genetic research and placental blood banking. Moreover, in the screening of placental blood for donation,

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