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Interest in and Experience with Genetic Testing for Late-Onset Medical Conditions: Results from the National Poll on Healthy Aging

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Abstract

Background

The increasing availability of genetic testing for late-onset diseases such as Alzheimer’s disease necessitates understanding public perceptions and experiences of such testing among at-risk populations.

Objectives

To assess (a) prior uptake of genetic testing (both in medical and direct-to-consumer settings), (b) future interest in genetic testing for late-onset conditions (e.g., Alzheimer’s disease, Parkinson’s disease), and (c) perceptions of testing pros and cons among middle-to-older aged adults.

Design

Online, cross-sectional survey study.

Setting

The National Poll on Healthy Aging at the University of Michigan is a recurring biannual survey of a nationally representative sample of adults aged 50–80. This study reports on a March 2018 fielding of the survey that included a genetic testing module administered to adults aged 50–64.

Participants

Study participants were 991 community-dwelling adults aged 50–64.

Measurements

Survey measures assessed (a) prior use of genetic testing, (b) reasons for engaging in genetic testing, (c) interest in different types of genetic testing, including for Alzheimer’s disease, Parkinson’s disease, and macular degeneration, and (d) perceived benefits, risks, and limitations of testing.

Results

Previous uptake of genetic testing was limited (medical use: 5.1%; direct-to-consumer: 10.8%), with direct-to-consumer test uptake higher among respondents with household incomes of $100,000 or more. Over half of adults endorsed interest in genetic testing for estimation of disease risk (58.9%), ancestry knowledge (58%), and informing medical care (53.8%). Interest in genetic testing for specific late-onset conditions was even higher, including Alzheimer’s disease (70%), Parkinson’s disease (65.3%), and macular degeneration (64.3%). Multivariable logistic regression models showed that older adults more likely to be interested in genetic testing for medical or disease risk purposes were those with higher levels of education (college degree or higher) and who endorsed the benefits of genetic testing, whereas respondents who endorsed testing risks and limitations were less likely to express interest.

Conclusion

While prior use of genetic testing among the middle-to-older age population was low, interest in testing for Alzheimer’s disease and other late-onset conditions was high. This high interest may translate into increased uptake given expanded access to testing and recent treatment advances for Alzheimer’s disease.

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Acknowledgements

The authors acknowledge support from the National Poll on Healthy Aging (NPHA), whose survey data for this manuscript has been made publicly available. The NPHA is conducted by the University of Michigan Institute for Healthcare Policy and Innovation and sponsored by the American Association of Retired Persons (AARP) and Michigan Medicine; its leadership team includes Dr. Jeffrey Kullgren, Dr. Erica Solway, Dianne Singer, Matthias Kirch, and Dr. Preeti Malani. The authors would also like to thank Sarah McCain, MPH, for her assistance with manuscript preparation.

Funding

Funding: This work was supported by fellowships from the National Institutes of Health (T32 HG010030 to SJF and DB), the University of Michigan (Department of Health Behavior & Health Education doctoral student award to SJF), and the National Institutes of Health-funded Michigan Alzheimer’s Disease Center (P30 AG072931 to JSR). The sponsors had no role in the design and conduct of the study; in the collection, analysis, and interpretation of data; in the preparation of the manuscript; or the review or approval of the manuscript.

Author information

Authors and Affiliations

  1. Department of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, USA

    S. J. Feldman & J. Scott Roberts

  2. Department of Social and Behavioral Health, School of Public Health, University of Nevada, Las Vegas, USA

    D. Blasco

  3. BayCare Hospital System, Tampa, USA

    M. Mones

Authors
  1. S. J. Feldman
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  2. D. Blasco
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  3. M. Mones
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  4. J. Scott Roberts
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Corresponding author

Correspondence to J. Scott Roberts.

Ethics declarations

Conflict of interests: SJF, DB, MM, and JSR have no conflicts of interest to disclose.

Ethical standards: The University of Michigan Institutional Review Board (IRB) reviewed this study and deemed it exempt from human subjects review because it was a study of deidentified respondents.

Additional information

How to cite this article: S.J. Feldman, D. Blasco, M. Mones, et al. Interest in and Experience with Genetic Testing for Late-Onset Medical Conditions: Results from the National Poll on Healthy Aging. J Prev Alz Dis 2024; https://doi.org/10.14283/jpad.2024.69

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Feldman, S.J., Blasco, D., Mones, M. et al. Interest in and Experience with Genetic Testing for Late-Onset Medical Conditions: Results from the National Poll on Healthy Aging. J Prev Alzheimers Dis (2024). https://doi.org/10.14283/jpad.2024.69

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