Biobanking

Recent Projects

Ethical Implications of Including Children in a Large Biobank for Genetic-Epidemiologic Research - A community engagement study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children. The study included 15 focus groups in 6 cities, where the inclusion of children in the proposed cohort study was discussed. The project was supported by a grant from the National Human Genome Research Institute, and the investigators were David Kaufman, Gail Geller, Lisa LeRoy, Juli Murphy, Joan Scott, and Kathy Hudson. Article

Ethical and Practical Issues Associated with Aggregating Databases- participated in a panel of bioethicists, scientists, and legal experts to develop guidelines for aggregating databases. Dr. Sugarman, together with David R. Karp from the University of Texas Southwestern Medical Center organized a two day meeting of the panel, which resulted in published recommendations. Article

Public Expectations for Return of Results from Large-Cohort Genetic Research

A public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. The study was funded by the National Human Genome Research Institute, and investigators included Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, and Kathy Hudson. Article

Selected Publications

Siegel A, Anderson MW, Schmidt TC, Youngner SJ. Informed consent to tissue donation: Policies and practice. Cell Tissue Bank 2009; 10: 235-40.

Karp DR, Carlin S, Cook-Deegan R, Ford DE, Geller G, Glass DN, Greely H, Guthridge J, Kahn J, Kaslow R, Kraft C, MacQueen K, Malin B, Scheuerman RH, Sugarman J. Ethical and practical Issues associated with aggregating databases. PLoS Medicine 2008; 5: e190 doi:10.1371/journal.pmed.0050190.

Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer- Edwards K, Green SK, Hodosh A, Juengst ET, Kaye J, Kedes L, Knoppers BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray P N, Sugarman J, Timmons M. Research ethics recommendations for whole-genome research: consensus statement. PLoS Biology 2008; 6: 430-435.

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