Attitudes toward childbearing and prenatal testing in individuals undergoing genetic testing for Lynch Syndrome
To examine attitudes toward childbearing and prenatal genetic testing among individuals at risk for Lynch Syndrome (LS), the most common type of hereditary colorectal cancer. Individuals undergoing clinical genetic testing for mismatch repair (MMR) gene mutations completed written questionnaires before and after testing. 161 of 192 (84%) eligible individuals participated in the study. Mean age was 46 years (range 20–75), 71% were female, 53% had a personal diagnosis of cancer, and 68% had children. Eighty percent worried about their children’s risk for developing cancer; however only 9% reported their decision to have children was affected by their family history of cancer. When asked whether providing prenatal testing to carriers of MMR gene mutations was ethical, 66% (86/130) of respondents agreed/strongly agreed, 25% (32) were neutral and 9% (12) disagreed/strongly disagreed. Of 48 individuals planning to have children in the future, 57% (27) intended to have children regardless of their genetic test result. If found to carry a MMR gene mutation that confirmed LS, 42% (20) would consider prenatal testing for a future pregnancy and 20% (7/35) of women would consider having children earlier in order to have prophylactic surgery to reduce their risk for gynecologic cancers. Individuals undergoing genetic testing for LS may utilize test results to make reproductive decisions. Clinicians should be prepared to discuss options of reproductive genetic technologies during counseling of LS patients of childbearing age.
KeywordsLynch syndrome Prenatal testing Preimplantation genetic diagnosis Family Genetic testing Genetic counseling
The authors would like to thank Bridget Neville, MS, for her assistance with statistical programming. The authors acknowledge the following sources of grant support: National Cancer Institute K07 CA 120448-04 (Dr. Stoffel), American Recovery and Reinvestment Act 3K07CA120448-03S1 (Dr. Stoffel), American College of Gastroenterology Junior Faculty Award (2004—Dr. Stoffel), National Cancer Institute K24 CA 113433 (Dr. Syngal).
Conflicts of interest
The authors have no conflicts to disclose.
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