What you don't know can hurt you

Adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing

Caryn Lerman, Chanita Hughes, Stephen J. Lemon, David Main, Carrie Snyder, Carolyn Durham, Steven Narod, Henry T. Lynch

Research output: Contribution to journalArticle

199 Citations (Scopus)

Abstract

Purpose: To identify members of hereditary breast and ovarian cancer families who are at risk far adverse psychologic effects of genetic testing. Patients and 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). Conclusion: 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 far potential adverse effects.

Original languageEnglish
Pages (from-to)1650-1654
Number of pages5
JournalJournal of Clinical Oncology
Volume16
Issue number5
StatePublished - May 1998
Externally publishedYes

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Genetic Testing
Depression
Ovarian Neoplasms
Neoplasms
Breast Neoplasms
Counseling
Cohort Studies
Odds Ratio
Prospective Studies
Confidence Intervals
Education

All Science Journal Classification (ASJC) codes

  • Cancer Research
  • Oncology

Cite this

What you don't know can hurt you : Adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. / Lerman, Caryn; Hughes, Chanita; Lemon, Stephen J.; Main, David; Snyder, Carrie; Durham, Carolyn; Narod, Steven; Lynch, Henry T.

In: Journal of Clinical Oncology, Vol. 16, No. 5, 05.1998, p. 1650-1654.

Research output: Contribution to journalArticle

Lerman, Caryn ; Hughes, Chanita ; Lemon, Stephen J. ; Main, David ; Snyder, Carrie ; Durham, Carolyn ; Narod, Steven ; Lynch, Henry T. / What you don't know can hurt you : Adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. In: Journal of Clinical Oncology. 1998 ; Vol. 16, No. 5. pp. 1650-1654.
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title = "What you don't know can hurt you: Adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing",
abstract = "Purpose: To identify members of hereditary breast and ovarian cancer families who are at risk far adverse psychologic effects of genetic testing. Patients and 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). Conclusion: 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 far potential adverse effects.",
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