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

Gloria M Petersen; Brian Van Ness

doi:10.1111/jlme.12294

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

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

Authors

Gloria M Petersen¹, Brian Van Ness²

Affiliations

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.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Databases, Genetic*
Disclosure / ethics*
Family*
Genetic Research / ethics*
Genomics / ethics*
Humans
Research Subjects*
Surveys and Questionnaires

Abstract

Publication types

MeSH terms

Grants and funding