title: Uncertainty in BRCA1 cancer susceptibility testing.
abstract: This study investigated uncertainty in individuals undergoing genetic counseling/testing for breast/ovarian cancer susceptibility. Sixty-three individuals from a single kindred with a known BRCA1 mutation rated uncertainty about 12 items on a five-point Likert scale before and 1 month after genetic counseling/testing. Factor analysis identified a five-item total uncertainty scale that was sensitive to changes before and after testing. The items in the scale were related to uncertainty about obtaining health care, positive changes after testing, and coping well with results. The majority of participants (76%) rated reducing uncertainty as an important reason for genetic testing. The importance of reducing uncertainty was stable across time and unrelated to anxiety or demographics. Yet, at baseline, total uncertainty was low and decreased after genetic counseling/testing (P = 0.004). Analysis of individual items showed that after genetic counseling/testing, there was less uncertainty about the participant detecting cancer early (P = 0.005) and coping well with their result (P < 0.001). Our findings support the importance to clients of genetic counseling/testing as a means of reducing uncertainty. Testing may help clients to reduce the uncertainty about items they can control, and it may be important to differentiate the sources of uncertainty that are more or less controllable. Genetic counselors can help clients by providing anticipatory guidance about the role of uncertainty in genetic testing.
authors.affiliation: Graduate Program in Genetic Counseling, Division of Medical Genetics, University of Utah Health Science Center, Salt Lake City, UT 84132, USA. bonnie.baty@hsc.utah.edu
authors.forename: Bonnie J
authors.initials: BJ
authors.lastname: Baty
authors.forename: William N
authors.initials: WN
authors.lastname: Dudley
authors.forename: Adrian
authors.initials: A
authors.lastname: Musters
authors.forename: Anita Y
authors.initials: AY
authors.lastname: Kinney
mesh_terms: D000293:Adolescent; D000328:Adult; D001741:Black or African American / Q000523:psychology; D000368:Aged; D000369:Aged, 80 and over; D019313:BRCA1 Protein / Q000235:genetics*; D005260:Female; D005817:Genetic Counseling / Q000523:psychology; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology*; D006579:Heterozygote; D006801:Humans; D008297:Male; D008875:Middle Aged; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D035501:Uncertainty
chemical_list: D019313:BRCA1 Protein