title: Family decision maker perspectives on the return of genetic results in biobanking research.
abstract: OBJECTIVE
  There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants.
  
  
  METHODS
  Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55).
  
  
  RESULTS
  Nearly every FDM wanted some form of genetic results returned. Information regarding treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than that regarding untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were four times more likely to have correct knowledge of the GTEx policy when their GTEx requester reported discussing the topic with them.
  
  
  CONCLUSIONS
  FDMs from the GTEx project were interested in receiving genetic test results. Marked changes in the infrastructure of the GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs to dispel misconceptions.Genet Med 18 1, 82-88.
authors: Department of Public Health, Temple University, Philadelphia, Pennsylvania, USA.
authors: Laura A
authors: LA
authors: Siminoff
authors: Department of Public Health, Temple University, Philadelphia, Pennsylvania, USA.
authors: Heather M
authors: HM
authors: Traino
authors: Department of Social and Behavioral Health, Virginia Commonwealth University, Richmond, Virginia, USA.
authors: Maghboeba
authors: M
authors: Mosavel
authors: Department of Social and Behavioral Health, Virginia Commonwealth University, Richmond, Virginia, USA.
authors: Laura
authors: http://orcid.org/0000-0001-9024-3708
authors: L
authors: Barker
authors: Department of Social and Behavioral Health, Virginia Commonwealth University, Richmond, Virginia, USA.
authors: Glencora
authors: http://orcid.org/0000-0002-7718-8860
authors: G
authors: Gudger
authors: Leidos Biomedical Research, Inc. Reston, Virginia, USA.
authors: Anita
authors: A
authors: Undale
mesh_terms: D000328:Adult; D001290:Attitude; D018070:Biological Specimen Banks / Q000941:ethics*; D032882:Comprehension; D003657:Decision Making / Q000941:ethics*; D005190:Family / Q000523:psychology*; D005260:Female; D005820:Genetic Testing; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D014019:Tissue Donors / Q000941:ethics / Q000523:psychology