What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing.
OBJECTIVE
To identify members of hereditary breast and ovarian cancer families who are at risk for adverse psychologic effects of genetic testing.


METHODS
A prospective cohort study with baseline (preeducation) assessments of predictor variables (ie, sociodemographic factors, cancer history, and cancer-related stress symptoms) was performed. The primary outcome variable (presence of depressive symptoms) was assessed at baseline and at 1- and 6-month follow-up evaluations. Participants were 327 adult male and female members of BRCA1- and BRCA2-linked hereditary breast and ovarian cancer families, who were identified as carriers, noncarriers, or decliners of genetic testing.


RESULTS
The presence of cancer-related stress symptoms at baseline was strongly predictive of the onset of depressive symptoms in family members who were invited but declined testing. Among persons who reported high baseline levels of stress, depression rates in decliners increased from 26% at baseline to 47% at 1-month follow-up; depression rates in noncarriers decreased and in carriers showed no change (odds ratio [OR] for decliners v noncarriers=8.0; 95% confidence interval [CI], 1.9 to 33.5; P=.0004). These significant differences in depression rates were still evident at the 6-month follow-up evaluation (P=.04).


CONCLUSIONS
In BRCA1/2-linked families, persons with high levels of cancer-related stress who decline genetic testing may be at risk for depression. These family members may benefit from education and counseling, even if they ultimately elect not to be tested, and should be monitored for potential adverse effects.
Lerman
C
C
Lombardi Cancer Center, Georgetown University Medical Center, Washington, DC 20007, USA. lermanc@gunet.georgetown.edu
Hughes
C
C
Lemon
S J
SJ
Main
D
D
Snyder
C
C
Durham
C
C
Narod
S
S
Lynch
H T
HT
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D024682:BRCA2 Protein; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology; D003863:Depression / Q000209:etiology; D005260:Female; D005500:Follow-Up Studies; D019398:Genes, BRCA1 / Q000235:genetics*; D016147:Genes, Tumor Suppressor / Q000235:genetics*; D006580:Genetic Carrier Screening; D005817:Genetic Counseling; D005819:Genetic Markers; D005820:Genetic Testing / Q000523:psychology*; D018095:Germ-Line Mutation; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D009363:Neoplasm Proteins / Q000235:genetics*; D016017:Odds Ratio; D010051:Ovarian Neoplasms / Q000235:genetics* / Q000523:psychology; D010342:Patient Acceptance of Health Care; D011446:Prospective Studies; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000209:etiology; D014157:Transcription Factors / Q000235:genetics*; D014342:Truth Disclosure
D024682:BRCA2 Protein; D005819:Genetic Markers; D009363:Neoplasm Proteins; D014157:Transcription Factors