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Original Investigation |

Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results

Jonathan Gooblar, MA1; Catherine M. Roe, PhD2,3; Natalie J. Selsor, MSW2; Matthew J. Gabel, PhD4; John C. Morris, MD2,5,6,7
[+] Author Affiliations
1Department of Psychology, Washington University in St Louis, St Louis, Missouri
2Knight Alzheimer Disease Research Center, Washington University in St Louis, St Louis, Missouri
3Department of Neurology, Washington University in St Louis, St Louis, Missouri
4Department of Political Science, Washington University in St Louis, St Louis, Missouri
5Department of Pathology and Immunology, Washington University in St Louis, St Louis, Missouri
6Department of Physical Therapy, Washington University in St Louis, St Louis, Missouri
7Program in Occupational Therapy, Washington University in St Louis, St Louis, Missouri
JAMA Neurol. 2015;72(12):1484-1490. doi:10.1001/jamaneurol.2015.2875.
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Importance  Results of Alzheimer disease (AD) research assessments typically are not disclosed to participants. Recent research has suggested interest in disclosure, but, to our knowledge, few studies have accounted for awareness of potential benefits and limitations of disclosure.

Objective  To determine the attitudes of cognitively normal research participants and members of the general public regarding disclosure of AD research results.

Design, Setting, and Participants  Participants in a longitudinal aging study (Alzheimer Disease Research Center [ADRC]) were given preintervention and postintervention surveys about disclosure attitudes. In a general public sample (The American Panel Survey), participants responded to a similar survey about disclosure attitudes.

Interventions  Participants in the ADRC sample were randomly assigned to a group (n = 119) that read an education intervention about the usefulness of AD biomarkers or to a placebo group (n = 100) that read as its intervention general information about the ADRC. Participants in the general public sample read a brief vignette describing participation in a longitudinal AD study.

Main Outcome and Measure  Interest in disclosure of AD research results.

Results  Cognitively normal ADRC participants (n = 219) were 60.7% (n = 133) female, 83.6% (n = 183) of white race, and reported a mean of 15.91 years of education. Twenty-nine individuals refused participation. The American Panel Survey participants (n = 1418) indicated they did not have AD and were 50.5% (n = 716) female, 76.7% (n = 1087) of white race, and reported a mean of 13.85 years of education. Overall, 77.6% of eligible participants (1583 of 2041) completed the survey in July 2014. Interest in disclosure was high among the ADRC participants (55.1% [119 of 216] were “extremely interested”). Viewing the education intervention predicted lower interest in disclosure (odds ratio, 2.01; 95% CI, 1.15-3.53; P = .02). High subjective risk of AD, a family history of AD, and minimal attendance at research meetings were associated with high interest after the intervention. In the general public, interest was lower overall (12.5% [174 of 1389] were “extremely interested”), but the subset of participants most likely to join an AD research study reported higher interest (43.5% [40 of 92] were extremely interested).

Conclusions and Relevance  Experience with AD appears to increase interest in disclosure of AD research results. Learning about potential limitations of disclosure somewhat tempered interest. These findings should inform the development of disclosure policies for asymptomatic individuals in AD studies.

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