Community perceptions related to brain donation: Evidence for intervention

Striley, Catherine W.; Milani, Sadaf Arefi; Kwiatkowski, Evan; DeKosky, Steven T.; Cottler, Linda B.

doi:10.1016/j.jalz.2018.09.005

Cited by 8 publications

(8 citation statements)

References 18 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Consistent with our previous work, which focused on brain donation among all HealthStreet participants [ 53 ], we found that non-Hispanic White and Hispanic adults aged 50 and older reported being likely or somewhat likely to donate their brain for research, compared with their non-Hispanic Black counterparts who mostly reported being not at all likely to be willing to donate their brain. Lambe and colleagues [ 54 ] examined perceptions of brain donation among Black adults aged 55 and older; their participants expressed that the brain donation was too intrusive and demanding, that the resulting research would not benefit their communities, and some distrust of researchers.…”

Section: Discussionsupporting

confidence: 90%

Willingness to Participate in Health Research Among Community-Dwelling Middle-Aged and Older Adults: Does Race/Ethnicity Matter?

Milani

Swain

Otufowora

et al. 2020

J. Racial and Ethnic Health Disparities

Self Cite

View full text Add to dashboard Cite

Introduction Older adults, including racial and ethnic minorities, are underrepresented in research. As the US population ages, the number of older racial and ethnic minority individuals will increase. Including these individuals in research is an important step towards reducing health disparities. Methods We used data from HealthStreet, a University of Florida community engagement program which uses community health workers to assess the health of the community, to assess willingness to participate in different types of health research by race/ethnicity. Descriptive statistics and logistic regression models were used to assess willingness to participate among adults aged 50 and older, by race/ethnicity (n = 4694). Results Our sample was 42.0% non-Hispanic White, 52.8% non-Hispanic Black, and 5.2% Hispanic. Non-Hispanic White participants reported more past research participation than non-Hispanic Black and Hispanic participants (28.7% vs. 19.0% and 19.2%, respectively). Compared with non-Hispanic White participants, non-Hispanic Black participants were less willing to participate in most types of studies, while Hispanic participants were less willing to participate in studies that might be seen as invasive (required blood sample, genetic sample, or participants to take medicine, or use of medical equipment). Conclusions Our study provides investigators with a general profile of research preferences by race/ethnicity; compared with non-Hispanic White individuals, non-Hispanic Black individuals are less willing to participate in most studies, while Hispanic individuals are less willing to participate in studies that may be seen as invasive or demanding. It is imperative to include diverse older adults in health research. By tailoring research based on preferences we can improve recruitment in underrepresented populations.

show abstract

Section: Discussionsupporting

confidence: 90%

Willingness to Participate in Health Research Among Community-Dwelling Middle-Aged and Older Adults: Does Race/Ethnicity Matter?

Milani

Swain

Otufowora

et al. 2020

J. Racial and Ethnic Health Disparities

Self Cite

View full text Add to dashboard Cite

show abstract

“…29 These findings highlight the importance of donor engagement and the provision of easily accessible and clearly written information on the process and purpose of donation. 22,[26][27][28] In this study, summary information was provided to respondents on how the procedure is performed, what happens to the brain tissue and how their pet's body will be taken care of sensitively and respectfully. Following collection of the brain, the pet can be immediately transferred to a crematorium of the owner's choice for individual cremation, so CABB donation will not interfere with the option for owners to have their pet's ashes returned to them.…”

Section: Discussionmentioning

confidence: 99%

“…In the USA, over 60% of people in one study indicated that they would be likely or somewhat likely to donate their brain for research. 22 Individuals most likely to donate also indicated a higher willingness to participate in other neuroscience research projects. 22 One responder in our study expressed interest in organ donation as an alternative to live animal experimentation, and the potential for archived brain tissue to reduce the number of animals used in research is an area that merits further research.…”

Section: Discussionmentioning

confidence: 99%

“…Public perception of brain and tissue banking and of the willingness to consent to donate has been studied in human medicine and varies widely according to multiple factors including ethnicity, religion, education and socioeconomic status. 22 Perceptions of companion animal brain banking and the barriers to pet brain and organ donation remain unknown. Therefore, the aim of this study was to assess pet owner perceptions of brain and tissue banking via an online questionnaire to increase awareness of the existence of the CABB and to optimise the consent and donation process for companion animals.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Perceptions and attitudes towards companion animal brain banking in pet owners: A UK pilot study

Cardy

Jewth‐Ahuja

2022

Veterinary Record Open

View full text Add to dashboard Cite

Background: Detailed analysis of archived brain tissue is fundamental to advancing the understanding of neurological disease. The development of the UK Brain Bank Network (UBBN) has provided an invaluable resource to facilitate such research in the human medical field. Similar resources are needed in veterinary medicine. However, collection and archiving of companion animal brain tissue is a potentially sensitive area for pet owners and veterinary professionals. Methods: Using an online survey, we aimed to study pet owners' perceptions of brain banking. The survey included information on respondents, their views on organ donation, the UBBN and the Royal Veterinary College's Companion Animal Brain Bank (RVC CABB). Results: In total 185 respondents were included. The use of brain tissue from pets for research was supported by 87% of respondents, and 66% of respondents felt that they were highly likely or likely to donate their pet's brain tissue to a CABB. Furthermore, 94% felt that more information on tissue banking in companion animals should be readily available. Conclusions: We found that the perceptions of companion animal brain banking were positive in our respondents. Open dialogue and clear information provision on the process and benefits of the CABB could enhance awareness and thus facilitate brain donation for translational research.

show abstract

“…Furthermore, brain autopsy and resultant brain tissue from persons in longitudinal studies on aging remain critical to developing and improving strategies to address Alzheimer's disease and related dementias (ADRD). [2][3][4] Available brain tissue in the United States largely originates from non-Considerations for Brain Autopsies among Diverse Older Adults -Glover et al parts, 12 insufficient brain tissue limits our understanding of and ability to address the disproportionate burden of ADRD for these underrepresented and understudied populations.…”

Section: Introductionmentioning

confidence: 99%

Perceived Impediments to Completed Brain Autopsies Among Diverse Older Adults Who Have Signed a Uniform Anatomical Gift Act for Brain Donation for Clinical Research

et al. 2020

View full text Add to dashboard Cite

Background: A small number of older adults in the United States who agree to brain donation for clinical research belong to diverse racial, ethnic, and economic groups. Those who agree, however, are less likely to have completed brain autopsies compared with older non-Latino Whites of higher socioeconomic status. As such, our understanding of Alzheimer’s disease and related dementias remains limited in these underrepresented and understudied populations. Here, we examine perceived impediments to completed brain autopsies among diverse older adults who have agreed to brain donation for clinical research.Methods: Participants (N=22) were older adults (mean age=77 years) who self-identified as African American (n=8), Latino (n=6), or White of lower income (n=8). All participants had previously agreed to brain donation via the Uniform Anatomical Gift Act. Each participant took part in a one-time, semi-structured focus group. Data were analyzed using a Grounded Theory Approach with both Open Coding and Constant Comparative Coding.Results: Perceived impediments to completed brain autopsies varied by group. Older African Americans and older Latinos expressed concern about a lack of follow-through by family members regarding their brain donation wishes. Older Whites of lower income indicated that their own uncertainty surrounding the processes of brain donation and brain autopsy might serve as an impediment.Discussion: Diverse older adults expressed different perceived impediments to having brain autopsies completed upon their death. Continuous education for diverse older adults and their family members regarding brain donation for clinical research, including clear guidelines and processes, may facilitate completed brain autopsies among diverse older adults.Ethn Dis. 2020;30(Suppl 2):709-718; doi:10.18865/ed.30.S2.709

show abstract

Community perceptions related to brain donation: Evidence for intervention

Cited by 8 publications

References 18 publications

Willingness to Participate in Health Research Among Community-Dwelling Middle-Aged and Older Adults: Does Race/Ethnicity Matter?

Willingness to Participate in Health Research Among Community-Dwelling Middle-Aged and Older Adults: Does Race/Ethnicity Matter?

Perceptions and attitudes towards companion animal brain banking in pet owners: A UK pilot study

Perceived Impediments to Completed Brain Autopsies Among Diverse Older Adults Who Have Signed a Uniform Anatomical Gift Act for Brain Donation for Clinical Research

Contact Info

Product

Resources

About