title: Disclosing individual CDKN2A research results to melanoma survivors: interest, impact, and demands on researchers.
abstract: BACKGROUND
  Whether to return individual research results from cancer genetics studies is widely debated, but little is known about how participants respond to results disclosure or about its time and cost burdens on investigators.
  
  
  METHODS
  We recontacted participants at one site of a multicenter genetic epidemiologic study regarding their CDKN2A gene test results and implications for melanoma risk. Interested participants were disclosed their results by telephone and followed for 3 months.
  
  
  RESULTS
  Among 39 patients approached, 27 were successfully contacted, and 19 (70% uptake) sought results, including three with mutations. Prior to disclosure, participants endorsed numerous benefits of receiving results (mean=7.7 of 9 posed), including gaining information relevant to their children's disease risk. Mean psychological well-being scores did not change from baseline, and no decreases to melanoma prevention behaviors were noted. Fifty-nine percent of participants reported that disclosure made participation in future research more likely. Preparation for disclosure required 40 minutes and $611 per recontact attempt. An additional 78 minutes and $68 was needed to disclose results.
  
  
  CONCLUSIONS
  Cancer epidemiology research participants who received their individual genetic research results showed no evidence of psychological harm or false reassurance from disclosure and expressed strong trust in the accuracy of results. Burdens to our investigators were high, but protocols may differ in their demands and disclosure may increase participants' willingness to enroll in future studies.
  
  
  CONCLUSIONS
  Providing individual study results to cancer genetics research participants poses potential challenges for investigators, but many participants desire and respond positively to this information.
authors.affiliation: Department of Health Behavior and Health Education, University of Michigan School of Public Health, 1415 Washington Heights, Ann Arbor, MI 48109-2029, USA. kdchrist@umich.edu
authors.forename: Kurt D
authors.initials: KD
authors.lastname: Christensen
authors.forename: J Scott
authors.initials: JS
authors.lastname: Roberts
authors.forename: David I
authors.initials: DI
authors.lastname: Shalowitz
authors.forename: Jessica N
authors.initials: JN
authors.lastname: Everett
authors.forename: Scott Y H
authors.initials: SY
authors.lastname: Kim
authors.forename: Leon
authors.initials: L
authors.lastname: Raskin
authors.forename: Stephen B
authors.initials: SB
authors.lastname: Gruber
mesh_terms: D000328:Adult; D000368:Aged; D030881:Disclosure / Q000941:ethics*; D005260:Female; D019942:Genes, p16; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing / Q000941:ethics; D006801:Humans; D008297:Male; D008545:Melanoma / Q000235:genetics* / Q000523:psychology*; D008875:Middle Aged; D017720:Molecular Epidemiology / Q000941:ethics*; D012307:Risk Factors; D017741:Survivors