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Article type: Research Article
Authors: Arias, Jalayne J.a; * | Lin, Grace A.b | Tyler, Ana M.c | Douglas, Michael P.d | Phillips, Kathryn A.d
Affiliations: [a] School of Public Health, Georgia State University, Atlanta, GA, USA | [b] Department of Internal Medicine, University of California, San Francisco, CA, USA | [c] Memory and Aging Center, Department of Neurology, University of California, San Francisco, CA, USA | [d] Center for Translational and Policy Research on Precision Medicine, University of California, San Francisco, CA, USA
Correspondence: [*] Correspondence to: Jalayne J. Arias, JD, Urban Life Building, 140 Decatur Street, Suite 400, Atlanta, GA 30303, USA. Tel.: +1 775 338 4976; E-mail: [email protected].
Abstract: Background:Research advancements in Alzheimer’s disease (AD) raise opportunities for genetic testing to improve diagnostic and risk assessment. Despite emerging developments, it is unclear how geriatricians perceive the potential clinical and personal utility of genetic testing for their patients. Geriatricians’ perspectives are essential to understanding potential ethical, policy, and clinical challenges. Objective:In this paper, we report on geriatricians’ perspectives on the utility of genetic testing for AD. Methods:Semi-structured interviews with California geriatricians within different practices settings to collect and characterize their perspectives on genetic testing for AD. We used an adapted grounded theory approach to analyze recorded and transcribed interviews. Results:We identified geriatricians’ (n = 10) perspectives on the clinical and personal utility of testing, alongside their views on clinical care approaches for older adults. Geriatricians perceived minimal clinical utility of genetic testing for AD, though that may change with the availability of disease-modifying therapies. Yet, they recognized the potential personal utility of testing (e.g., assisting with future financial planning). Finally, geriatricians expressed concerns regarding patients’ anxiety from learning about genetic status, particularly through direct-to-consumer (DTC) testing. Conclusion:Our data highlight that the decision to order genetic testing requires clinical and ethical considerations, including balancing limited clinical utility with the potential personal utility. Although DTC testing is available, geriatricians perceive that they have an important role in managing the decision to test and interpreting the results. Further research is needed to inform policy and ethical guidelines to support geriatricians’ critical role to counsel patients considering clinical and DTC genetic testing.
Keywords: Alzheimer’s disease, APOE, direct-to-consumer testing, genetic testing
DOI: 10.3233/JAD-220674
Journal: Journal of Alzheimer's Disease, vol. 90, no. 3, pp. 1011-1019, 2022
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