ELSIcon2022 Paper: Attitudes toward and actual uptake of genetic testing among a nationally representative sample of middle-to-older aged U.S. adults

ELSIcon2022 • Paper • May 31, 2022

Drew Blasco, Sara Feldman, J. Scott Roberts

Understanding factors that influence genetic testing decisions among older adults is important given emerging options for genetic risk assessment of late onset neuropsychiatric diseases. To better understand public attitudes and experiences regarding such testing, we conducted a survey among a nationally representative sample (n=991) of adults aged 50-64. Relatively few respondents had previously completed genetic testing for either medical use (5.1%) or in direct-to-consumer (10.8%) contexts. Among these respondents, commonly endorsed reasons for uptake of genetic testing for medical purposes were due to a doctor recommendation (37.3%), to understand general disease risk (29.4%), and for treatment of a current health condition (19.6%); for direct-to-consumer genetic testing, the most endorsed reason was learning information about one’s ancestry (71.0%). Overall, over half of participants endorsed interest in genetic testing for estimation of disease risk (58.9%), ancestry knowledge (58%), and informing medical care (53.8%). Testing interest was even higher for specific later-life conditions including Alzheimer’s disease (70.0%), Parkinson’s disease (65.3%), and macular degeneration (64.3%). The only demographic characteristic associated with interest in genetic testing for medical care or health risk use was level of education, with more highly educated respondents (college degree or higher) expressing greater interest (Adjusted OR = 1.72). While relatively few middle-to-older age adults reported previous genetic testing engagement, many expressed high interest in such testing. Given this interest level and developments in late-onset neuropsychiatric conditions including Alzheimer’s disease, we may see greater uptake of genetic testing among older adults in both medical and direct-to-consumer contexts moving forward.