Changes to perceptions of the pros and cons of genetic susceptibility testing after APOE genotyping for Alzheimer disease risk
- PMID: 21270636
- PMCID: PMC3170997
- DOI: 10.1097/GIM.0b013e3182076bf1
Changes to perceptions of the pros and cons of genetic susceptibility testing after APOE genotyping for Alzheimer disease risk
Abstract
Purpose: Perceptions about the pros and cons of genetic susceptibility testing are among the best predictors of test utilization. How actual testing changes such perceptions has yet to be examined.
Methods: In a clinical trial, first-degree relatives of patients with Alzheimer disease received genetic risk assessments for Alzheimer disease including APOE disclosure. Participants rated 11 possible benefits associated with genetic testing (pros) and 10 risks or limitations (cons) before genetic risk disclosure and again 12 months afterward.
Results: Pros were rated higher than cons at baseline (3.53 vs. 1.83, P < 0.001) and at 12 months after risk disclosure (3.33 vs. 1.88, P < 0.001). Ratings of pros decreased during the 12-month period (3.33 vs. 3.53, P < 0.001). Ratings of cons did not change (1.88 vs. 1.83, P = 0.199) except for a three-item discrimination subscale which increased (2.07 vs. 1.92, P = 0.012). Among specific pros and cons, three items related to prevention and treatment changed the most.
Conclusion: The process of APOE genetic risk assessment for Alzheimer disease sensitizes some to its limitations and the risks of discrimination; however, 1-year after disclosure, test recipients still consider the pros to strongly outweigh the cons.
Conflict of interest statement
Disclosure: The authors declare no conflict of interest.
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References
-
- Kasparian NA, Meiser B, Butow PN, Simpson JM, Mann GJ. Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genet Med. 2009;11:265–278. - PubMed
-
- Roberts JS, Connell CM, Cisewski D, Hipps YG, Demissie S, Green RC. Differences between African Americans and whites in their perceptions of Alzheimer disease. Alzheimer Dis Assoc Disord. 2003;17:19–26. - PubMed
-
- Roberts JS. Anticipating response to predictive genetic testing for Alzheimer’s disease: a survey of first-degree relatives. Gerontologist. 2000;40:43–52. - PubMed
-
- Lerman C, Narod S, Schulman K, et al. BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. JAMA. 1996;275:1885–1892. - PubMed
-
- Rosenstock IM. Historical origins of the Health Belief Model. Health Educ Monogr. 1974;2:328–335.
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