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Member Research and Reports

Member Research and Reports

Kentucky: Participant Concerns, Not Lack of Knowledge, Hamper Recruitment for Alzheimer’s Genetic Research

To propel research on Alzheimer’s disease (AD) treatment and prevention, researchers are reliant on participants who are willing to provide genetic samples. Yet a limited public understanding of what AD genetic research entails, as well as concerns about participation, may pose challenges for those charged with recruiting research participants.

With these challenges in mind, a group of investigators from the University of Kentucky, Johns Hopkins University, and the University of California – Irvine, undertook a new study to discover how well older adults understand AD genetic research – and whether their understanding is related to concerns about participation, or willingness to engage. The results of their study appear in Public Health Genomics.

Investigators used survey instruments which included a mock consent form with corresponding knowledge and opinion questions regarding AD. The surveys were mailed to participants from the University of Kentucky Alzheimer’s Disease Center and to a list of randomly selected individuals within the same age range from a local voter registration list. Descriptive and multivariable linear regression analyses were conducted.

The returned surveys demonstrated the limits of what the respondents understood immediately after reading the relevant material. While comprehension gaps were not related to level of concern or willingness to engage, concerns were related to willingness to engage. Such concerns were greater among individuals not actively involved in research, individuals from minority groups, and those with higher levels of education. The investigators conclude that focusing on concerns, rather than on knowledge, may help increase participation in AD research.

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