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, Pearl O’Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness, Benjamin S. Wilfond

Research output: Contribution to journalComment/debatepeer-review

8 Scopus citations


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 (CSER) Consortium. The authors then negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death.

Original languageEnglish (US)
Pages (from-to)87-109
Number of pages23
JournalJournal of Law, Medicine and Ethics
Issue number1
StatePublished - Mar 2018

Bibliographical note

Funding Information:
Preparation of this article was supported by the National Institutes of Health (NIH), National Cancer Institute (NCI) and National Human Genome Research Institute (NHGRI) grant 1R01CA154517 on “Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment” (Gloria Petersen, Barbara Koenig, Susan M. Wolf, Principal Investigators). This work benefited from the investigators’ participation in the NIH-funded Clinical Sequencing Exploratory Research (CSER) Consortium. The biobank at the Mayo Clinic SPORE in Pancreatic Cancer is supported by NIH grants P50CA102701 and R01CA97075. Additional support was provided by NIH grants P20HG007243 (Koenig); and U01HG006500, U19HD077671, and R01HG005092 (Green). The contents of this article are solely the responsibility of the authors and do not necessarily represent the views of NIH or the CSER Consortium. Thanks to Heather Bennett, J.D., and Jon Watkins, J.D. candidate, for research assistance during this project and to Audrey Boyle for outstanding management of the work yielding this paper. Thanks also to Sydney Viel, M.P.H., at the University of Minnesota’s Clinical and Translational Research Institute for review of the templates offered in the Appendices.

Publisher Copyright:
© 2018 The Author(s).


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