title: Discordance in selected designee for return of genomic findings in the event of participant death and estate executor.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Medical Genetics University of Washington Seattle Washington.
authors.forename: Jessie L
authors.identifier: 0000-0003-3290-068X
authors.initials: JL
authors.lastname: Goodman
authors.affiliation: Division of Medical Genetics University of Washington Seattle Washington.
authors.forename: Laura M
authors.initials: LM
authors.lastname: Amendola
authors.affiliation: Division of Medical Genetics University of Washington Seattle Washington.
authors.forename: Martha
authors.initials: M
authors.lastname: Horike-Pyne
authors.affiliation: Department of Bioethics and Humanities University of Washington Seattle Washington.
authors.forename: Susan B
authors.initials: SB
authors.lastname: Trinidad
authors.affiliation: Department of Bioethics and Humanities University of Washington Seattle Washington.
authors.forename: Stephanie M
authors.initials: SM
authors.lastname: Fullerton
authors.affiliation: Division of Medical GeneticsUniversity of WashingtonSeattleWashington; Department of Bioethics and HumanitiesUniversity of WashingtonSeattleWashington.
authors.forename: Wylie
authors.initials: W
authors.lastname: Burke
authors.affiliation: Division of Medical GeneticsUniversity of WashingtonSeattleWashington; Department of Genome SciencesUniversity of WashingtonSeattleWashington.
authors.forename: Gail P
authors.initials: GP
authors.lastname: Jarvik
keywords: Executor; family communication; genomic sequencing; return of results