title: The introduction of a choice to learn pre-symptomatic DNA test results for BRCA or Lynch syndrome either face-to-face or by letter.
abstract: In predictive DNA testing for hereditary cancer, test results should traditionally be disclosed face-to-face. Increasingly, however, counselees ask to receive their test result at home by letter. To compare the quality of genetic counselling in the traditional way to a procedure in which counselees are offered a choice on how to get their test result. Counselees from families with a known BRCA1/2 or Lynch syndrome mutation were randomised into two groups. The control group was given the DNA test result in a face-to-face consultation. In the intervention group people could choose to learn their test result face-to-face or by letter. The quality of genetic counselling was assessed through questionnaires at three different moments. Data of 198 counselees were analysed. The quality of genetic counselling and psychological functioning were equally good in both groups. The majority of cases chose for disclosure by letter. The counselees with a good test result in the intervention group were the most satisfied. Our results indicate that in predictive DNA testing for BRCA1/2 and Lynch syndrome, a choice protocol is equally safe and more satisfying. Moreover, it is more efficient for both counsellor and counselee.
authors.affiliation: Department of Medical Psychology, University of Groningen and University Medical Center Groningen, 9700 RB Groningen, The Netherlands. j.s.voorwinden@umcg.nl
authors.forename: J S
authors.initials: JS
authors.lastname: Voorwinden
authors.forename: J P C
authors.initials: JP
authors.lastname: Jaspers
authors.forename: J G
authors.initials: JG
authors.lastname: ter Beest
authors.forename: Y
authors.initials: Y
authors.lastname: Kievit
authors.forename: R H
authors.initials: RH
authors.lastname: Sijmons
authors.forename: J C
authors.initials: JC
authors.lastname: Oosterwijk
mesh_terms: D000328:Adult; D002755:Choice Behavior; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics* / Q000523:psychology*; D030881:Disclosure; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D033283:Patient Access to Records; D017060:Patient Satisfaction; D036301:Qualitative Research; D011795:Surveys and Questionnaires