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

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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 (US)
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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© 2015 American Society of Law, Medicine & Ethics, Inc.

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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

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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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.",

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

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