title: Perspectives of surrogate decision makers for critically ill patients regarding gene variation research.
abstract: OBJECTIVE
  We undertook this investigation to explore the manner in which surrogate decision makers for critically ill patients perceived genetic data collected in the context of clinical investigation.
  
  
  METHODS
  Surrogate decision makers for critically ill patients cared for in intensive care units of two urban hospitals participated in focus groups designed to explore perceptions regarding gene variation research.
  
  
  RESULTS
  Surrogate decision makers were generally familiar with genetic concepts and reported that they could provide an informed opinion regarding permitting (or declining) the participation of their loved ones in gene variation research. Respondents perceived the risk associated with this type of research largely as the risk associated with acquiring the sample (i.e., whether it involved an invasive procedure or not) but appreciated that genetic samples could provide information not readily obtained from nongenetic sources. Concerns about potential misuse of genetic data largely centered on misconduct, paternity, forensic applications, and insurance and employment discrimination. Although surrogate decision makers expressed that their loved ones would have interest in return of results and being recontacted for future use, these interests were secondary to confidentiality concerns.
  
  
  CONCLUSIONS
  Respondents perceived genetic and nongenetic data as comparable. Informed consent processes that provide clear information regarding confidentiality protections, specimen handling, and parameters for future use may enhance enrollment.Genet Med 2013:15(5):368-373.
authors.affiliation: Department of Pediatrics, Children's Hospital Los Angeles, California, USA.
authors.forename: Ellen
authors.initials: E
authors.lastname: Iverson
authors.forename: Aaron
authors.initials: A
authors.lastname: Celious
authors.forename: Carie R
authors.initials: CR
authors.lastname: Kennedy
authors.forename: Erica
authors.initials: E
authors.lastname: Shehane
authors.forename: Alexander
authors.initials: A
authors.lastname: Eastman
authors.forename: Victoria
authors.initials: V
authors.lastname: Warren
authors.forename: Bradley D
authors.initials: BD
authors.lastname: Freeman
mesh_terms: D003219:Confidentiality; D016638:Critical Illness; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D020458:Third-Party Consent