Discordance in selected designee for return of genomic findings in the event of participant death and estate executor

• Published in: Molecular genetics & genomic medicine 2017-03, Vol.5 (2), p.172-176
• Main Authors: Goodman, Jessie L., Amendola, Laura M., Horike‐Pyne, Martha, Trinidad, Susan B., Fullerton, Stephanie M., Burke, Wylie, Jarvik, Gail P.
• Format: Article
• Language: English
• Subjects: Colorectal cancer; Consent; Consortia; Death; Demographics; Discordance; Executor; family communication; Family medical history; Genetic research; Genomes; genomic sequencing; Hispanic Americans; Medicine; Mortality; Original; Patients; return of results; Verbal communication
• ISSN: 2324-9269; 2324-9269
• DOI: 10.1002/mgg3.274

Background Legal and ethical questions arise regarding disseminating genetic research results to family members in the event of a research participant's death; failure to return or return to legal next of kin or estate executor may not reflect participant desires. We sought to determine participant preferences for whether and to whom they would like their data released in the case of their death prior to receiving genomic results, focusing on whether the person selected was also their estate executor. Methods The University of Washington NEXT Medicine Study of the Clinical Sequencing Exploratory Research program previously reported participant preferences regarding designating an individual to receive genomic results in the event of death, including whether they want results shared, and if so, with what person. Participants were also asked whether this designee is executor of their will or estate. Results To date, 61 individuals were asked about the concordance of their study designee and legal representative: 42 (69%) reported having a will or estate plan and of these, 14 (33%) chose someone other than their executor to receive their results. For the 14 who chose someone other than their estate executor to receive genetic results, 12 (86%) chose a family member, typically a biological relative, as their designee. Those with a different genomic designee than their executor were less likely to be partnered (P = 0.0024). For those partnered participants without an estate plan, spouses were not always chosen for return of genomic results. Conclusion For one‐third of our participants, the individual deemed most appropriate by the participant to receive their genomic results was not the executor. In the absence of an explicit designation, HIPAA may prohibit access to genomic results to persons other than the executor; hence asking for designation at the time of study enrollment (or initiation of clinical testing) is important. Given the potential impact that the results of genomic sequencing can have for family members, choosing how results are communicated to families after death is critical. In the absence of an explicit designation, the individual deemed most appropriate to receive results may not have legal access to those results under HIPAA. We present here an examination of whether participants in a research study who chose a designee to receive genetic results in the event of death, have designated this same person as their named estate executor.