Daryl Shaw

Synopsis: Evaluating the brain after death is considered the gold standard for diagnosing most brain disorders. However, while Black\African Americans are twice as likely to develop Alzheimer’s disease as compared to non-Hispanic Whites, they make up less than 2% of brain donations for research. More participation of Black / African Americans in this research will be important to make progress toward effective treatments.

Results: We have looked at attitudes toward brain donation and perceptions of medical research. Surveys distributed to 227 Black\African American community members found that:

  • 27% reported being likely to donate their brain to research after death vs. 32% who reported not being likely.
  • 73% of people said that they trust medical researchers.
    Few people had ever been asked to donate their brain (11%) or a loved one’s
    brain (6%).
  • Families play a major role in the decision for brain donation. Many people were
    not confident if their family would carry out their wish for brain donation to
    research.
  • Most people believe that their family would be more likely to discuss brain
    donation if they had more information about it.

Conclusions: This survey serves as a first step in increasing our understanding of how to engage Black / African Americans in brain donation research. Overall, the major takeaways from the survey are:

  • Though community members reported relatively low levels of knowledge about
    Alzheimer’s disease and brain donation research there was also high levels of
    trust and hope in research and science to cure diseases which may be an
    important opportunity for sharing the importance of brain donation so that
    community members can make informed decisions about participating in
    research and brain donation.
  • Only about a quarter of the surveys were completed by males. More efforts to
    find out about how to interest Black\African American males in research on
    Alzheimer’s disease and brain donation are critically needed. Providing this
    information to men in locations where men are already gathered, such as
    barbershops or faith-based institutions may be a useful approach.