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

Fingerprint

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

Keywords

  • CDKN2A variant
  • Genetic research results
  • Melanoma
  • Pancreatic cancer
  • Psychological outcome

ASJC Scopus subject areas

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

Cite this

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

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.
@article{60eb09b22bf948bc87b5f4159b22dfed,
title = "Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result",
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.",
keywords = "CDKN2A variant, Genetic research results, Melanoma, Pancreatic cancer, Psychological outcome",
author = "Xuan Zhu and Leof, {Emma R.} and Rabe, {Kari G.} and McCormick, {Jennifer B.} and Petersen, {Gloria M} and {Radecki Breitkopf}, Carmen",
year = "2018",
month = "1",
day = "1",
doi = "10.1159/000496556",
language = "English (US)",
volume = "21",
pages = "154--163",
journal = "Public Health Genomics",
issn = "1662-4246",
publisher = "S. Karger AG",
number = "3-4",

}

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.

KW - CDKN2A variant

KW - Genetic research results

KW - Melanoma

KW - Pancreatic cancer

KW - Psychological outcome

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

VL - 21

SP - 154

EP - 163

JO - Public Health Genomics

JF - Public Health Genomics

SN - 1662-4246

IS - 3-4

ER -