Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations

Susan M. Wolf; Rebecca Branum; Barbara A. Koenig; Gloria M. Petersen; Susan A. Berry; Laura M. Beskow; Mary B. Daly; Conrad V. Fernandez; Robert C. Green; Bonnie S. Leroy; Noralane M. Lindor; P. Pearl O'Rourke; Carmen Radecki Breitkopf; Mark A. Rothstein; Brian Van Ness; Benjamin S. Wilfond

doi:10.1111/jlme.12288

Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations

Susan M. Wolf
, Rebecca Branum
, Barbara A. Koenig
, Gloria M. Petersen
, Susan A. Berry
, Laura M. Beskow
, Mary B. Daly
, Conrad V. Fernandez
, Robert C. Green
, Bonnie S. Leroy
, Noralane M. Lindor
, P. Pearl O'Rourke
, Carmen Radecki Breitkopf
, Mark A. Rothstein
, Brian Van Ness
, Benjamin S. Wilfond

University of Minnesota Twin Cities
Uni. of Minnesota's
University of California at San Francisco
Mayo Clinic College of Medicine and Science
American Academy of Pediatrics
Duke University
Iowa State University
Boston University
University of North Carolina at Chapel Hill
Dalhousie University
Brigham and Women's Hospital
Mayo Clinic Arizona
University of Minnesota
Wake Forest University
Partners HealthCare
Yale University
SUNY Albany
University of Louisville
Seattle Children's Hospital
Division of Bioethics
University of Washington

Research output: Contribution to journal › Article › peer-review

93 Scopus citations

Abstract

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Original language	English
Pages (from-to)	440-463
Number of pages	24
Journal	Journal of Law, Medicine and Ethics
Volume	43
Issue number	3
DOIs	https://doi.org/10.1111/jlme.12288
State	Published - Sep 1 2015

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10.1111/jlme.12288

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Wolf, S. M., Branum, R., Koenig, B. A., Petersen, G. M., Berry, S. A., Beskow, L. M., Daly, M. B., Fernandez, C. V., Green, R. C., Leroy, B. S., Lindor, N. M., O'Rourke, P. P., Breitkopf, C. R., Rothstein, M. A., Van Ness, B., & Wilfond, B. S. (2015). Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations. Journal of Law, Medicine and Ethics, 43(3), 440-463. https://doi.org/10.1111/jlme.12288

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title = "Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations",

abstract = "Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.",

author = "Wolf, \{Susan M.\} and Rebecca Branum and Koenig, \{Barbara A.\} and Petersen, \{Gloria M.\} and Berry, \{Susan A.\} and Beskow, \{Laura M.\} and Daly, \{Mary B.\} and Fernandez, \{Conrad V.\} and Green, \{Robert C.\} and Leroy, \{Bonnie S.\} and Lindor, \{Noralane M.\} and O'Rourke, \{P. Pearl\} and Breitkopf, \{Carmen Radecki\} and Rothstein, \{Mark A.\} and \{Van Ness\}, Brian and Wilfond, \{Benjamin S.\}",

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Wolf, SM, Branum, R, Koenig, BA, Petersen, GM, Berry, SA, Beskow, LM, Daly, MB, Fernandez, CV, Green, RC, Leroy, BS, Lindor, NM, O'Rourke, PP, Breitkopf, CR, Rothstein, MA, Van Ness, B & Wilfond, BS 2015, 'Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations', Journal of Law, Medicine and Ethics, vol. 43, no. 3, pp. 440-463. https://doi.org/10.1111/jlme.12288

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AU - Wolf, Susan M.

AU - Branum, Rebecca

AU - Koenig, Barbara A.

AU - Petersen, Gloria M.

AU - Berry, Susan A.

AU - Beskow, Laura M.

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AU - Green, Robert C.

AU - Leroy, Bonnie S.

AU - Lindor, Noralane M.

AU - O'Rourke, P. Pearl

AU - Breitkopf, Carmen Radecki

AU - Rothstein, Mark A.

AU - Van Ness, Brian

AU - Wilfond, Benjamin S.

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Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations

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