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) |
|---|---|
| Pages (from-to) | 154-163 |
| Number of pages | 10 |
| Journal | Public health genomics |
| Volume | 21 |
| Issue number | 3-4 |
| DOIs | |
| State | Published - Jan 1 2018 |
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All Science Journal Classification (ASJC) codes
- Public Health, Environmental and Occupational Health
- Genetics(clinical)
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Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result. / Zhu, Xuan; Leof, Emma R.; Rabe, Kari G.; McCormick, Jennifer B.; Petersen, Gloria M.; Radecki Breitkopf, Carmen.
In: Public health genomics, Vol. 21, No. 3-4, 01.01.2018, p. 154-163.Research output: Contribution to journal › Article
TY - JOUR
T1 - Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result
AU - Zhu, Xuan
AU - Leof, Emma R.
AU - Rabe, Kari G.
AU - McCormick, Jennifer B.
AU - Petersen, Gloria M.
AU - Radecki Breitkopf, Carmen
PY - 2018/1/1
Y1 - 2018/1/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85065555489&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85065555489&partnerID=8YFLogxK
U2 - 10.1159/000496556
DO - 10.1159/000496556
M3 - Article
C2 - 30999302
AN - SCOPUS:85065555489
VL - 21
SP - 154
EP - 163
JO - Public Health Genomics
JF - Public Health Genomics
SN - 1662-4246
IS - 3-4
ER -