Abstract
BackgroundLegal 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.MethodsThe 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.ResultsTo 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.ConclusionFor 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.
Highlights
The integration of genetic and genomic data into clinical medicine has sparked important questions regarding how and what results are provided to patients and research participants (Jarvik et al 2014)
For one-third of our participants, the individual deemed most appropriate by the participant to receive their genomic results was not the executor
Funded New Exome Technology in () Medicine study, which offers randomization to exome sequencing for patients being evaluated for hereditary colorectal cancer/polyposis (CRCP), we developed a consent document that allows participants to designate a particular person to receive genomic results in the event of the participant’s death prior to receipt
Summary
The integration of genetic and genomic data into clinical medicine has sparked important questions regarding how and what results are provided to patients and research participants (Jarvik et al 2014). A genetic test result in an affected family member is most informative; results for unaffected family members can be difficult to interpret in the absence of results from an affected family member These characteristics make genetic information obtained in a relative of potential high interest to family members. Patients and research participants are encouraged to share their results with family members, but in some cases and of particular concern for those with cancer, they may die before results can be returned. This poses important questions about whether, and to whom, to return findings. 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 their estate executor
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