Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result

Xuan Zhu, Emma R. Leof, Kari G. Rabe, Jennifer B. McCormick, Gloria M. Petersen, Carmen Radecki Breitkopf

Research output: Contribution to journalArticle

1 Citation (Scopus)

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 languageEnglish (US)
Pages (from-to)154-163
Number of pages10
JournalPublic health genomics
Volume21
Issue number3-4
DOIs
StatePublished - Jan 1 2018

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Genetic Research
Disclosure
Learning
Psychology
Uncertainty
Research
Hope
Quality of Life
Health
Postal Service
Genetic Testing
Pancreatic Neoplasms
Telephone
Registries
Counseling
Pancreas
Melanoma
Neoplasms
Anxiety

All Science Journal Classification (ASJC) codes

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

Cite this

Zhu, X., Leof, E. R., Rabe, K. G., McCormick, J. B., Petersen, G. M., & Radecki Breitkopf, C. (2018). Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result. Public health genomics, 21(3-4), 154-163. https://doi.org/10.1159/000496556
Zhu, Xuan ; Leof, Emma R. ; Rabe, Kari G. ; McCormick, Jennifer B. ; Petersen, Gloria M. ; Radecki Breitkopf, Carmen. / Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result. In: Public health genomics. 2018 ; Vol. 21, No. 3-4. pp. 154-163.
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Zhu, X, Leof, ER, Rabe, KG, McCormick, JB, Petersen, GM & Radecki Breitkopf, C 2018, 'Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result', Public health genomics, vol. 21, no. 3-4, pp. 154-163. https://doi.org/10.1159/000496556

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 journalArticle

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AU - Radecki Breitkopf, Carmen

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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.

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