title: Impact of Genetic Counseling and Testing on Altruistic Motivations to Test for BRCA1/2: a Longitudinal Study.
abstract: Despite the importance of altruism in an individual's participation in genetic counseling and testing, little research has explored the change in altruistic motivations to test over time. This study analyzed altruistic motivations to test and change in altruistic motivations after genetic counseling and testing among individuals (N = 120) at elevated risk for BRCA1/2 mutations. The perceived benefits of genetic testing were assessed and utilized in a mixed-methods, repeated measures design at three time points: pre-counseling, counseling and post-genetic testing, along with transcripts of genetic counseling sessions. Qualitative analysis using an immersion/crystallization method resulted in six common perceived benefits of testing: cancer prevention, awareness, family's survival, relief from anxiety, for science, and future planning. Perceived benefits were then coded into three categories according to Hamilton's kin selection theory: altruistic motivation, personal motivation, and motivation for mutual benefit. At pre-counseling, those with a personal cancer history (p = 0.003) and those with one or more children (p = 0.013), were significantly more likely to cite altruistic motivations to test. Altruistic motivations significantly increased post-counseling (p = 0.01) but declined post-testing (p < 0.001). Labov's narrative analysis further elucidated the context of altruistic and personal motivations. The possibility of a positive test result might have led those with personal history of cancer to have altruistic motivations for testing. Genetic counseling may have increased altruistic motivations to help family and may be a prime opportunity to discuss other forms of altruism.
authors.affiliation: Department of Pharmaceutical Systems and Policy, School of Pharmacy, Robert C. Byrd Health Sciences Center, West Virginia University, PO Box 9510, Morgantown, WV, 26506, USA.
authors.forename: Rahul
authors.initials: R
authors.lastname: Garg
authors.affiliation: Ohio University Heritage College of Osteopathic Medicine, Athens, OH, 45701, USA.
authors.forename: Joseph
authors.initials: J
authors.lastname: Vogelgesang
authors.affiliation: Department of Pharmaceutical Systems and Policy, School of Pharmacy, Robert C. Byrd Health Sciences Center, West Virginia University, PO Box 9510, Morgantown, WV, 26506, USA. kmkelly@hsc.wvu.edu.|Mary Babb Randolph Cancer Center, West Virginia University, Morgantown, WV, 26506, USA. kmkelly@hsc.wvu.edu.
authors.forename: Kimberly
authors.initials: K
authors.lastname: Kelly
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D008137:Longitudinal Studies; D008487:Medical History Taking; D008875:Middle Aged; D009042:Motivation; D009154:Mutation; D009369:Neoplasms / Q000235:genetics*; D055815:Young Adult
keywords: Altruism; BRCA1/2; Genetic counseling; Genetic testing; Motivation to test