Political Ideology, Confidence in Science, and Participation in Alzheimer Disease Research Studies.

BACKGROUND: Americans' confidence in science varies based on their political ideology. This ideological divide has potentially important effects on citizens' engagement with and participation in clinical studies of Alzheimer disease (AD). METHODS: A probability sample of 1583 Americans was surveyed about their willingness to participate in longitudinal AD research and about their political attitudes. These survey results were compared with a survey of 382 participants in a longitudinal AD study at the Knight Alzheimer Disease Research Center. RESULTS: Among Americans, more conservative ideology decreases willingness to participate in a hypothetical longitudinal cohort study of AD both directly and through its negative effect on confidence in science. The Knight Alzheimer Disease Research Center study participants expressed more liberal ideology and greater confidence in science than Americans in general. Of the survey respondents opposed to participation, over a quarter changed to neutral or positive if the study returned their research results to them. CONCLUSIONS AND RELEVANCE: Clinical studies of AD are likely biased toward participants who are more liberal and have higher confidence in science than the general population. This recruitment bias may be reduced by lowering the trust demanded of participants through measures such as returning research results to participants.

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

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.

Developing an international network for Alzheimer research: The Dominantly Inherited Alzheimer Network.

The Dominantly Inherited Alzheimer Network (DIAN) is a collaborative effort of international Alzheimer disease (AD) centers that are conducting a multifaceted prospective biomarker study in individuals at-risk for autosomal dominant AD (ADAD). DIAN collects comprehensive information and tissue in accordance with standard protocols from asymptomatic and symptomatic ADAD mutation carriers and their non-carrier family members to determine the pathochronology of clinical, cognitive, neuroimaging, and fluid biomarkers of AD. This article describes the structure, implementation, and underlying principles of DIAN, as well as the demographic features of the initial DIAN cohort.