Year: 2013
Type: article
Study design: Observational Study
Abstract: There is an underrepresentation of racial and ethnic minorities in clinical research across the United States. Minority participation in dementia trials is less than 5%. Barriers include mistrust and need for education. Latinos are the fastest growing elderly group in the US and within the next 50 years, they will be disproportionately represented in the groups most at risk for AD. Identifying attitudes towards research participation in socioeconomically disadvantaged minorities will allow for systematic approaches toward recruitment. The Research Attitudes Questionnaire, adapted from Jefferson (2011), was used in program evaluations of 123 elderly attendees of community talks on memory and aging in East Harlem, New York City, a community that is over 90% minority. The anonymous questionnaires also obtained basic demographic information, years in the US and country of origin. The questionnaires were in English or Spanish, and participants were asked to answer seven questions on a 5-point Likert Scale (1=strongly disagree, 2=disagree, 3=neutral, 4=agree, 5=strongly agree) (see Table 1). The mean age of our minority sample (N=123) was 72.6 +/-8.9, with 10.2 +/-4 years of education; 64% were born outside of the US. Overall, 72% of the sample demonstrated positive attitudes (score of 4 or 5) towards research in general and 80% endorsed that more resources should be devoted to research. Questions regarding trust and safety were rated most negatively. Eighteen percent (score of 1 or 2) endorsed researchers could not be trusted to protect the interest of participants and 23% (score of 1 or 2) expressed concern over perceived safety of participating in research. Results for trustworthiness and safety were significantly less positive in the urban minority sample than in Jefferson's sample, which were highly educated white participants already enrolled in longitudinal research. No significant differences were found between the two groups regarding allocation of resources for research and attitudes towards positive outcomes of medical research, indicating a generally favorable attitude towards research. Our results highlight the importance of developing educational and social opportunities that foster relationships, decrease mistrust and address safety concerns.
Source: Alzheimer s & Dementia
Institution: Icahn School of Medicine at Mount Sinai
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W2085979272