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.
Original language | English (US) |
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Pages (from-to) | 154-163 |
Number of pages | 10 |
Journal | Public health genomics |
Volume | 21 |
Issue number | 3-4 |
DOIs | |
State | Published - 2018 |
Keywords
- CDKN2A variant
- Genetic research results
- Melanoma
- Pancreatic cancer
- Psychological outcome
ASJC Scopus subject areas
- Public Health, Environmental and Occupational Health
- Genetics(clinical)