Return of Research Results: What about the Family?

Lawrenz F. Sobotka S. , “Empirical Analysis of Current Approaches to Incidental Findings,” Journal of Law, Medicine & Ethics 36, no. 2 (2008): 249–255.

NIH, NHGRI grant # 1–R01-HG003178 (Wolf, PI).

Wolf S. M. , “Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations,” Journal of Law, Medicine & Ethics 36, no. 2 (2008): 219–248.

See, e.g., Fabsitz R. R. , “Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants,” Circulation: Cardiovascular Genetics 3, no. 6 (2010): 574–580. For a subsequent overview, see Presidential Commission for the Study of Bioethical Issues, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts (2013), available at <http://bioethics.gov/sites/default/files/FINALAnticipateCommunicate_PCSBI_0.pdf> (last visited August 18, 2015).

Wolf S. M. , “Return of Individual Research Results and Incidental Findings: Facing the Challenges of Translational Science,” Annual Review of Genomics and Human Genetics 14 (2013): 557–577; Wolf S. M. , “Incidental Findings in Neuroscience Research: A Fundamental Challenge to the Structure of Bioethics and Health Law,” in Illes J. Sahakian B. J. , eds., The Oxford Handbook of Neuroethics (New York: Oxford University Press, 2011): At 623–634.

NIH, NHGRI grant # 2–R01-HG003178 (Wolf, PI).

Wolf S. M. , “Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets,” Genetics in Medicine 14, no. 4 (2012): 361–384.

A few forward-looking articles have begun exploring this issue. See, e.g., Battistuzzi L. , “Communication of Clinically Useful NGS Results to At-Risk Relatives of Deceased Research Participants: Toward Active Disclosure?” Journal of Clinical Oncology 31, no. 32 (2013): 4164–4165; Lolkema M. P. , “Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology,” Journal of Clinical Oncology 31, no. 15 (2013): 1842–1848, at 1846; Chan B. , “Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives,” American Journal of Bioethics 12, no. 10 (2012): 1–8, and related commentaries in that issue; Tassé A. M. , “The Return of Results of Deceased Research Participants,” Journal of Law, Medicine & Ethics 39, no. 4 (2011): 621–630.

CSER: Clinical Sequencing Exploratory Research, available at <https://cser-consortium.org/> (last visited August 18, 2015).

Wolf S. M. , “Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations,” Journal of Law, Medicine & Ethics 43, no. 3 (2015): 440–463.