Should We Offer Genomic Research Results to a Participant's Family, Including After the Participant's Death?

Wolf SM. Introduction: Return of Research Results: What About the Family?. Journal of Law, Medicine & Ethics 2015;43(3):437-439. Download PDF (69.61 KB)

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, Radecki Breitkopf C, Rothstein MA, Van Ness B, Wilfond BS. Returning a Research Participant’s Genomic Results to Relatives: Analysis and Recommendations. Journal of Law, Medicine & Ethics  2015;43(3):440-463. Download PDF (2.12 MB)

Radecki Breitkopf C, Petersen GM, Wolf SM, Chaffee KG, Robinson ME, Gordon DR, Lindor NM, Koenig BA. Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank. Journal of Law, Medicine & Ethics  2015;43(3):464-475. Download PDF (438.28 KB)

Amendola LM, Horike-Pyne M, Trinidad SB, Fullerton SM, Evans BJ, Burke W, Jarvik GP. Patients’ Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death. Journal of Law, Medicine & Ethics  2015;43(3):476-485. Download PDF (1.63 MB)

Wolf SM, Burke W, Koenig BA. Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide. Journal of Law, Medicine & Ethics  2015;43(3):486-501. Download PDF (1.29 MB)

Beskow LM, O'Rourke PP. Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles. Journal of Law, Medicine & Ethics  2015;43(3):502-513. Download PDF (351.95 KB)

Fernandez CV, O'Rourke PP, Beskow LM. Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families. Journal of Law, Medicine & Ethics  2015;43(3):514-522. Download PDF (229.72 KB)

Petersen GM, Van Ness B. Returning a Research Participant’s Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks. Journal of Law, Medicine & Ethics  2015;43(3):523-528. Download PDF (146.16 KB)