Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

Carmen Radecki Breitkopf; Gloria M Petersen; Susan M Wolf; Kari G Chaffee; Marguerite E Robinson; Deborah R Gordon; Noralane M Lindor; Barbara A Koenig

doi:10.1111/jlme.12289

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

J Law Med Ethics. 2015 Fall;43(3):464-75. doi: 10.1111/jlme.12289.

Authors

Carmen Radecki Breitkopf¹, Gloria M Petersen², Susan M Wolf³, Kari G Chaffee⁴, Marguerite E Robinson⁵, Deborah R Gordon⁶, Noralane M Lindor⁷, Barbara A Koenig⁸

Affiliations

¹ Associate Professor of Health Services Research in the Department of Health Sciences Research at Mayo Clinic College of Medicine in Rochester, Minnesota. She earned her Master's and Doctoral degrees in Psychology from The State University of New York at Albany.
² 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 University of Oregon, and Ph.D. in Anthropology from UCLA. She is a Founding Fellow of the American College of Medical Genetics and Genomics.
³ McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; Faculty member, Center for Bioethics; and Chair, Consortium on Law and Values in Health, Environment & the Life Sciences at the University of Minnesota. She is one of three Principal Investigators on NIH/NCI/NHGRI grant # R01 CA154517 on return of genomic results to family members, including after the death of the proband.
⁴ MS Statistician III in the Department of Health Sciences Research at Mayo Clinic College of Medicine in Rochester, Minnesota. She earned her Master's degree in Statistics from Iowa State University.
⁵ Program Manager for Biomedical Ethics Research at Mayo Clinic in Rochester, Minnesota. She earned her Master's degree in Religion & Ethics from Yale University Divinity School and Master's degree in Biotechnology from Columbia University.
⁶ Assistant Professor of Medical Anthropology in the Department of Anthropology, History, and Social Medicine at the University of California, San Francisco and an Affiliate of the Berkeley Center for Social Medicine at University of California, Berkeley. She earned her B.A. in Anthropology at UC Berkeley, her Master's degree at the Tel Aviv University and UCSF, and her Ph.D. in Medical Anthropology at UCSF/UC Berkeley. She has conducted qualitative, ethnographic research on a wide range of health-related topics in the United States, Israel, and Italy.
⁷ Professor of Medical Genetics in the Department of Health Sciences Research at Mayo Clinic in Scottsdale, Arizona. She received her Bachelor of Arts degree from the University of Minnesota, her doctorate of medicine from Mayo Medical School in Rochester, Minnesota and completed her residencies at Bowman Gray School of Medicine in Winston-Salem, North Carolina, and at Mayo Clinic in Rochester, Minnesota.
⁸ Professor of Bioethics and Medical Anthropology based at the Institute for Health & Aging, University of California, San Francisco. Currently, she co-directs a Center of Excellence in ELSI Research that focuses on translational genomics, co-leads an NCI/NHGRI R01 on return of results in genomic biobanks, and directs the ELSI component of a U19 award focused on newborn screening in an era of whole genome analysis.

Abstract

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Adult
Aged
Aged, 80 and over
Attitude
Biological Specimen Banks*
Confidentiality / ethics
Confidentiality / legislation & jurisprudence
Disclosure* / ethics
Disclosure* / legislation & jurisprudence
Family*
Female
Genetic Research* / ethics
Genetic Research* / legislation & jurisprudence
Genomics* / ethics
Genomics* / legislation & jurisprudence
Humans
Male
Middle Aged
Pancreatic Neoplasms / genetics*
Patient Preference* / legislation & jurisprudence
Patient Preference* / psychology
Surveys and Questionnaires
Young Adult

Abstract

Publication types

MeSH terms

Grants and funding