Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death

Chan B. , “Genomic Inheritances: Disclosing Individual Research Results from Whole-Exome Sequencing to Deceased Participants' Relatives,” AJOB 12, no. 10 (2012): 1–8.

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; Green R. C. , “ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing,” Genetics in Medicine 15, no. 7 (2013): 565–574; American College of Medical Genetics, ACMG Updates Recommendation on “Opt Out” for Genome Sequencing Return of Results (2014), available at <https://www.acmg.net/docs/Release_ACMGUpdatesRecommendations_final.pdf> (last visited January 15, 2015).

Chan, supra note 1; Fullerton S. M. , “Beneficence, Clinical Urgency, and the Return of Individual Research Results to relatives,” AJOB 12, no. 10 (2012): 9–10; Bredenoord A. L. van Delden J. J. , “Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy,” AJOB 12, no. 10 (2012): 10–12.

Chan , supra note 1.

Fullerton , supra note 3.

Bombard Y. , “Risks to Relatives in Genomic Research: A Duty to Warn?” AJOB 12, no. 10 (2012): 12–14.

Offit K. , “The ‘Duty to Warn’ a Patient's Family Members about Hereditary Disease Risks,” JAMA 292, no. 12 (2004): 1469–1473.

Forest L. E. , “Communicating Genetic Information in Families – A Review of Guidelines and Position Papers,” European Journal of Human Genetics 15, no. 6 (2007): 612–618.

CSER: Clinical Sequencing Exploratory Research, available at <https://cser-consortium.org/> (last visited April 2, 2015); National Human Genome Research Institute (NHGRI), Clinical Sequencing Exploratory Research (CSER), available at <http://www.genome.gov/27546194> (last visited August 1, 2015).

Dodd-McCue D. , “The Role of Women in the Donation Consent Decision: Building on Previous Research,” Progress in Transplantation 17, no. 3 (2007): 209–214.

Batte B. , “Family Communication in a Population at Risk for Hypertrophic Cardiomyopathy,” Journal of Genetic Counseling 24, no. 2 (2014): 336–348; Green J. , “Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer,” Journal of Genetic Counseling 6, no. 1 (1997): 45–60.

Palmquist A. E. , “‘The Cancer Bond’: Exploring the Formation of Cancer Risk Perception in Families with Lynch Syndrome,” Journal of Genetic Counseling 19, no. 5 (2010): 473–486.

U.S. Department of Health and Human Services, Office for Civil Rights, Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules, 78 Federal Register 5566–5702 (2013).

45 C.F.R. § 160.103 (2014).

45 C.F.R. § 164.502(g)(4) (2014); U.S. Department of Health and Human Services, supra note 12, at 5614–15.

U.S. Department of Health and Human Services, supra note 13, at 5616.

Id., at 5614.

Id., at 5615; see also 45 C.F.R. § 164.510(b)(5) ( Providing , “Uses and disclosures when the individual is deceased. If the individual is deceased, a covered entity may disclose to a family member, or other persons identified in paragraph (b)(1) of this section who were involved in the individual's care or payment for health care prior to the individual's death, protected health information of the individual that is relevant to such person's involvement, unless doing so is inconsistent with any prior expressed preference of the individual that is known to the covered entity.”).

Brunner M. T. , “What constitutes power coupled with interest within the rule as to termination of agency,” 28 A.L.R.2d 1243, §§ 1, 11 (1953, updated to 2015).

U.S. Department of Health and Human Services, supra note 12, at 5616.

45 C.F.R. § 164.522; U.S. Department of Health & Human Services, Office for Civil Rights, Health Information of Deceased Individuals (2013), available at <http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/decedents.html> (last visited August 1, 2015).

U.S. Department of Health and Human Services, supra note 13, at 5615.

Bombard , supra note 6; Offit , supra note 7.

U.S. Department of Health & Human Services, Office for Civil Rights, How Can Family Members of a Deceased Individual Obtain the Deceased Individual's Protected Health Information that is Relevant to their Own Care? (2013), available at <http://www.hhs.gov/ocr/privacy/hipaa/faq/personal_representatives_and_minors/222.html> (August 1, 2015).

U.S. Department of Health & Human Services, Office for Civil Rights, Under the HIPAA Privacy Rule, May a Health Care Provider Disclose Protected Health Information About an Individual to Another Provider, When Such Information Is Requested for the Treatment of a Family Member of the Individual? (2009), available at <http://www.hhs.gov/ocr/privacy/hipaa/faq/disclosures_to_friends_and_family/512.html> (last visited August 1, 2015).

Galvin K. Clayman M. L. , “Disclosure/Disruption: Considering Why Not to Disclose Genetic Information after Death,” AJOB 12, no. 10 (2012): 14–16.

45 C.F.R. § 164.522.

U.S. Department of Health & Human Services, supra note 24.

Bredenoord van Delden , supra note 3.