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- Title
Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result.
- Authors
Zhu, Xuan; Leof, Emma R.; Rabe, Kari G.; McCormick, Jennifer B.; Petersen, Gloria M.; Radecki Breitkopf, Carmen
- Abstract
Objectives: Little is known about genetic research participants' responses to receiving individual research results (IRR) from cancer genetic research. We examined the immediate and delayed psychological impact of returning a CDKN2A variant result that is associated with increased risk of pancreatic cancer and melanoma. Methods: One hundred and thirty-three pancreas research registry enrollees whose samples were tested in a research laboratory for the CDKN2A variant were invited by mail to learn the result by telephone and participate in a study about the disclosure process. Self-rated health, quality of life, and emotional responses were surveyed before and 6 months after disclosure. Genetic testing-specific distress, uncertainty, and positive experiences were assessed 6 months after disclosure. Results: Eighty individuals agreed to participate; 63 completed the study. Both carriers and noncarriers showed no change over time in self-rated health, quality of life, or anxiety levels. Carriers reported more sadness than noncarriers before and 6 months after disclosure. Both carriers and noncarriers showed more hopefulness 6 months after than before disclosure. Carriers experienced greater test-specific distress and uncertainty than noncarriers, but levels were low. -Conclusions: Return of IRR in conjunction with cancer prevention counseling led to low levels of test-specific distress and uncertainty among carriers. No other adverse psychological outcomes were observed.
- Subjects
GENETIC research; CYCLIN-dependent kinase inhibitor-2A; CANCER genetics; RISK factors of pancreatic cancer; MELANOMA; QUALITY of life; GENETIC testing
- Publication
Public Health Genomics, 2018, Vol 21, Issue 3/4, p154
- ISSN
1662-4246
- Publication type
Article
- DOI
10.1159/000496556