Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks

Shaw D. M. , “What Is a Biobank? Differing Definitions among Biobank Stakeholders,” Clinical Genetics 85, no. 3 (2014): 223–227.

National Center for Biotechnology Information, Database of Genotypes and Phenotypes (dbGaP) (2015), available at <http://www.ncbi.nlm.nih.gov/gap> (last visited August 20, 2015).

International Cancer Genome Consortium, International Cancer Genome Consortium (ICGC) (2015), available at <https://icgc.org/icgc> (last visited August 20, 2015).

International Society for Biological and Environment Repositories (ISBER), Connecting Respositories Globally through Best Practices (2015), available at <http://www.isber.org/> (last visited August 20, 2015).

National Cancer Institute, Biosrespositories and Biospecimen Research Branch, NCI Best Practices for Biospecimen Resources (2011), available at <http://biospecimens.cancer.gov/practices/> (last visited August 20, 2015).

Bemmels H. R. , “Mapping the Inputs, Analyses, and Outputs of Biobank Research Systems to Identify Sources of Incidental Findings and Individual Research Results for Potential Return to Participants,” Genetics in Medicine 14, no. 4 (2012): 385–392.

Henderson G. E. , “Characterizing Biobank Organizations in the U.S.: Results From a National Survey,” Genome Medicine 5 no. 1 (2013): 3; Henderson G. E. , “Stewardship Practices of U.S. Biobanks,” Science Translational Medicine 5, no. 215 (2013): 215cm7.

Id., at 215cm7.

Meulenkamp T. M. , “Researchers' Opinions Towards the Communication of Results of Biobank Research: A survey Study,” European Journal of Human Genetics 20, no. 3 (2012): 258–262.

Ramoni R. B. , “Experiences and Attitudes of Genome Investigators Regarding Return of Individual Genetic Test Results,” Genetics in Medicine 15, no. 11 (2013): 882–887.

Klitzman R. , “Researchers' Views on Return of Incidental Genomic Research Results: Qualitative and Quantitative Findings,” Genetics in Medicine 15, no. 11 (2013): 888–895.

Ferriere M. Van Ness B. , “Return of Individual Research Results and Incidental Findings in the Clinical Trials Cooperative Group Setting,” Genetics in Medicine 14, no. 4 (2012): 411–416.

Petersen G. M. , Mayo Clinic SPORE in Pancreatic Cancer (2015), available at <http://www.mayo.edu/research/centers-programs/cancer-research/research-programs/gastrointestinal-cancer-program/pancreatic-cancer-spore-grant/core-resources> (last visited August 20, 2015).

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

National Cancer Institute, NCI Molecular Analysis for Therapy Choice Program (MATCH) & Pediatric MATCH (2015), available at <http://www.cancer.gov/clinicaltrials/noteworthytrials/match> (last visited August 20, 2015).

See Ferriere Van Ness , supra note 12.

Black L. , “Funding Considerations for the Disclosure of Genetic Incidental Findings in Biobank Research,” Clinical Genetics 84, no. 5 (2013): 397–406.

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.

Wolf S. M. , “Return of Results in Genomic Biobank Research: Ethics Matters,” Genetics in Medicine 15, no. 2 (2013): 157–159.

See Henderson , supra note 7.

See Ferriere Van Ness , supra note 12.

See Wolf , supra note 18.