Public Understanding and Opinions regarding Genetic Research on Alzheimer's Disease

Saida Kent, Shoshana H. Bardach, Xuan Zhang, Erin L. Abner, Joshua D. Grill, Gregory A. Jicha

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

Abstract

Background: Participants willing to provide genetic samples are needed to propel research on Alzheimer's disease (AD) treatment and prevention forward. A limited public understanding of what AD genetic research entails and concerns about participation may constitute recruitment challenges. Objectives: This study seeks to understand how well older adults understand AD genetic research and whether their understanding is related to concerns about participation or willingness to engage. Methods: Our surveys 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. Results: The returned surveys (n = 502) demonstrated limits to what the respondents understood immediately after reading the relevant material, with a mean summary knowledge score of 74.5 out of 100. While comprehension gaps were not related to level of concern or willingness to engage, concerns were related to willingness to engage. Concerns were greater among individuals not actively involved in research, individuals from minority groups, and those with higher levels of education. Conclusions: Focusing on concerns specifically, rather than on knowledge more generally, may help increase participation.

Original languageEnglish
Pages (from-to)228-237
Number of pages10
JournalPublic Health Genomics
Volume21
Issue number5-6
DOIs
StatePublished - Aug 1 2019

Bibliographical note

Funding Information:
The project described was supported by the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health (through grant UL-1TR001998), and the National Institute on Aging (P30 AG028383). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Publisher Copyright:
© 2019 S. Karger AG, Basel. All rights reserved.

Keywords

  • Alzheimer's disease
  • Concerns
  • Genetic research
  • Knowledge
  • Questionnaire
  • Research participation
  • Survey

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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