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  1.  44
    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 - 2015 - Journal of Law, Medicine and Ethics 43 (3):440-463.
    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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  2.  36
    When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing.Leila Jamal, Jill O. Robinson, Kurt D. Christensen, Jennifer Blumenthal-Barby, Melody J. Slashinski, Denise Lautenbach Perry, Jason L. Vassy, Julia Wycliff, Robert C. Green & Amy L. McGuire - 2017 - AJOB Empirical Bioethics 8 (2):82-88.
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  3.  9
    Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the “Benefit to Families”.Benjamin S. Wilfond, Conrad V. Fernandez & Robert C. Green - 2015 - Journal of Law, Medicine and Ethics 43 (3):552-558.
    Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future (...)
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  4.  33
    Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.Susan M. Wolf, Emily Scholtes, 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 - 2018 - Journal of Law, Medicine and Ethics 46 (1):87-109.
    Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...)
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  5.  50
    Gina, genism, and civil rights.George J. Annas, Patricia Roche & Robert C. Green - 2008 - Bioethics 22 (7):ii-iv.
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  6.  14
    An Ethical Framework for Research Using Genetic Ancestry.Anna C. F. Lewis, Santiago J. Molina, Paul S. Appelbaum, Bege Dauda, Agustin Fuentes, Stephanie M. Fullerton, Nanibaa' A. Garrison, Nayanika Ghosh, Robert C. Green, Evelynn M. Hammonds, Janina M. Jeff, David S. Jones, Eimear E. Kenny, Peter Kraft, Madelyn Mauro, Anil P. S. Ori, Aaron Panofsky, Mashaal Sohail, Benjamin M. Neale & Danielle S. Allen - 2023 - Perspectives in Biology and Medicine 66 (2):225-248.
    ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...)
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