Linda Boise awarded 2-year grant from the National Alzheimer’s Coordinating Center
Across the NIH-funded Alzheimer’s Disease Centers (ADCs), the challenge of recruiting and retaining research subjects from diverse ethnic communities leads to under-representation of ethnic minorities in research studies. Even greater difficulties arise when the research protocol requires consent to brain autopsy.
In this proposed project, we will study the factors that influence whether or not research subjects from four population groups agree to donate their brain when they die. Our specific aims are
- Examine the knowledge, attitudes, and beliefs of research subjects and family members (or significant others) from four ethnic groups (African American, Latino, Chinese and non-Hispanic Whites) about brain donation for research, and
- Identify the effect of ethnicity and other factors on willingness to assent to brain donation for research.
This two-year study will be carried out in two phases.
First, through focus groups conducted at the four collaborating institutions (OHSU, UC Davis, UC San Francisco, Boston University) we will explore the experiences, attitudes, and beliefs of older adults from four ethnic groups related to brain autopsy.
Second, we will implement a survey disseminated to research subjects through ADC Education Cores. The self-report questionnaire will include demographic variables (age, ethnic group, gender, education, acculturation), variables identified from the focus groups (for example, religious beliefs, attitudes towards/beliefs about the body, experience with research, involvement of family members in decisions, and knowledge of Alzheimer’s disease) and other factors (e.g., ADC site, type of study they are participating, etc.). The questionnaire will be administered in English, Spanish, and Chinese.
We will use logistic regression to determine whether there are differences in the proportion of willingness to consent to autopsy for the different ethnic groups, and for each ethnic group analyzed separately to identify the factors associated with willingness to consent for autopsy.
This study will fill a critical gap in our knowledge about consent for brain donation and will inform the development of culturally-specific community outreach interventions to increase understanding and receptivity to participate in Alzheimer’s disease research programs, including assent to brain autopsy.