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J Law Med Ethics. 2015 Fall;43(3):523-8. doi: 10.1111/jlme.12294.

Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.

Author information

1
Professor of Epidemiology in the Department of Health Sciences Research at Mayo Clinic College of Medicine in Rochester, Minnesota. She earned her Master's degree in Anthropology from the University of Oregon, and Ph.D. in Anthropology from UCLA. She is a Founding Fellow of the American College of Medical Genetics and Genomics.
2
Professor of Genetics, Cell Biology and Development at the University of Minnesota. He earned his doctorate in Biochemistry from the University of Minnesota and completed a postdoctoral fellowship at Fox Chase Cancer Center in Philadelphia, and has served as the Department Head and Director of the Institute of Human Genetics at the University of Minnesota.

Abstract

Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families.

PMID:
26479561
PMCID:
PMC4617601
DOI:
10.1111/jlme.12294
[Indexed for MEDLINE]
Free PMC Article

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