{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T23:20:58Z","timestamp":1787008858686,"version":"build-2736575974"},"reference-count":20,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2016,3,2]],"date-time":"2016-03-02T00:00:00Z","timestamp":1456876800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"name":"National Alzheimer\u2019s Coordinating Center","award":["U01 AG016976"],"award-info":[{"award-number":["U01 AG016976"]}]},{"name":"Oregon Alzheimer\u2019s Disease Center","award":["P30AG008017"],"award-info":[{"award-number":["P30AG008017"]}]},{"DOI":"10.13039\/100007707","name":"University of California, Davis","doi-asserted-by":"publisher","award":["3P30AG010129-24"],"award-info":[{"award-number":["3P30AG010129-24"]}],"id":[{"id":"10.13039\/100007707","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007707","name":"University of California, Davis","doi-asserted-by":"publisher","award":["5P30AG043097-03"],"award-info":[{"award-number":["5P30AG043097-03"]}],"id":[{"id":"10.13039\/100007707","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100008069","name":"University of California, San Francisco","doi-asserted-by":"publisher","award":["P50 AG023501"],"award-info":[{"award-number":["P50 AG023501"]}],"id":[{"id":"10.13039\/100008069","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100008069","name":"University of California, San Francisco","doi-asserted-by":"publisher","award":["K24 AG045333-01"],"award-info":[{"award-number":["K24 AG045333-01"]}],"id":[{"id":"10.13039\/100008069","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007161","name":"Boston University","doi-asserted-by":"publisher","award":["P30 AG13846"],"award-info":[{"award-number":["P30 AG13846"]}],"id":[{"id":"10.13039\/100007161","id-type":"DOI","asserted-by":"publisher"}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG019610"],"award-info":[{"award-number":["P30 AG019610"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG013846"],"award-info":[{"award-number":["P30 AG013846"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG008702"],"award-info":[{"award-number":["P50 AG008702"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG025688"],"award-info":[{"award-number":["P50 AG025688"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG010133"],"award-info":[{"award-number":["P30 AG010133"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005146"],"award-info":[{"award-number":["P50 AG005146"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005134"],"award-info":[{"award-number":["P50 AG005134"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG016574"],"award-info":[{"award-number":["P50 AG016574"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005138"],"award-info":[{"award-number":["P50 AG005138"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG008051"],"award-info":[{"award-number":["P30 AG008051"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG013854"],"award-info":[{"award-number":["P30 AG013854"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG008017"],"award-info":[{"award-number":["P30 AG008017"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG010161"],"award-info":[{"award-number":["P30 AG010161"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG010129"],"award-info":[{"award-number":["P30 AG010129"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG016573"],"award-info":[{"award-number":["P50 AG016573"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG016570"],"award-info":[{"award-number":["P50 AG016570"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005131"],"award-info":[{"award-number":["P50 AG005131"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG023501"],"award-info":[{"award-number":["P50 AG023501"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG035982"],"award-info":[{"award-number":["P30 AG035982"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG028383"],"award-info":[{"award-number":["P30 AG028383"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG010124"],"award-info":[{"award-number":["P30 AG010124"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005133"],"award-info":[{"award-number":["P50 AG005133"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005142"],"award-info":[{"award-number":["P50 AG005142"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P30 AG012300"],"award-info":[{"award-number":["P30 AG012300"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005136"],"award-info":[{"award-number":["P50 AG005136"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG033514"],"award-info":[{"award-number":["P50 AG033514"]}]},{"name":"NIA-funded Alzheimer\u2019s Disease Centers","award":["P50 AG005681"],"award-info":[{"award-number":["P50 AG005681"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2017,8,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Purpose of the Study<\/jats:title>\n                    <jats:p>Studying the brain through autopsy is an essential component of Alzheimer\u2019s disease research. Racial and ethnic minorities are underrepresented in Alzheimer\u2019s research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer\u2019s Disease Centers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design and Methods<\/jats:title>\n                    <jats:p>Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain research and the process of brain removal, (b) religious beliefs, and (c) the role of the family.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Implications<\/jats:title>\n                    <jats:p>Our findings suggest that interventions to enhance enrollment in brain donation that target factors identified in this study are likely to be relevant to people from a broad range of backgrounds and ethnicities. Nonetheless, we observed some potential differences among racial\/ethnic groups that may affect how research volunteers and their families approach a decision about donating their brain for research. Further study is warranted to explore these and other possible culturally distinct attitudes and beliefs about brain donation.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/geront\/gnv683","type":"journal-article","created":{"date-parts":[[2016,3,2]],"date-time":"2016-03-02T22:43:59Z","timestamp":1456958639000},"page":"719-734","source":"Crossref","is-referenced-by-count":22,"title":["Will My Soul Go to Heaven If They Take My Brain? Beliefs and Worries About Brain Donation Among Four Ethnic Groups"],"prefix":"10.1093","volume":"57","author":[{"given":"Linda","family":"Boise","sequence":"first","affiliation":[{"name":"Layton Aging & Alzheimer\u2019s Disease Center, Oregon Health and Science University , Portland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ladson","family":"Hinton","sequence":"additional","affiliation":[{"name":"Department of Psychiatry and Behavioral Sciences, University of California Davis School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Howard J.","family":"Rosen","sequence":"additional","affiliation":[{"name":"UCSF Memory and Aging Center, University of California , San Francisco"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Ruhl","sequence":"additional","affiliation":[{"name":"Layton Aging & Alzheimer\u2019s Disease Center, Oregon Health and Science University , Portland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2016,3,2]]},"reference":[{"key":"2026010517365192700_CIT0002","author":"Barry","year":"2013"},{"key":"2026010517365192700_CIT0003","doi-asserted-by":"crossref","first-page":"820","DOI":"10.1001\/jama.1995.03530100060035","article-title":"Ethnicity and attitudes toward patient autonomy","volume":"274","author":"Blackhall","year":"1995","journal-title":"Journal of the American Medical Association"},{"key":"2026010517365192700_CIT0004","doi-asserted-by":"crossref","first-page":"202","DOI":"10.1097\/00002093-200010000-00003","article-title":"Autopsy recruitment program for African Americans","volume":"14","author":"Bonner","year":"2000","journal-title":"Alzheimer\u2019s Disease & Associated Disorders"},{"key":"2026010517365192700_CIT0005","doi-asserted-by":"crossref","first-page":"93","DOI":"10.1007\/s10903-005-2642-8","article-title":"Susceptibility of elderly Asian immigrants to persuasion with respect to participation in research","volume":"7","author":"Brugge","year":"2005","journal-title":"Journal of Immigrant Health"},{"key":"2026010517365192700_CIT0006","first-page":"23","article-title":"An ethno-medical perspective on research participation: A qualitative pilot study","volume":"8","author":"Calderon","year":"2006","journal-title":"Medscape General Medicine"},{"key":"2026010517365192700_CIT0008","author":"Cohen","year":"2006"},{"key":"2026010517365192700_CIT0009","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1177\/1533317511423020","article-title":"African American participation in Alzheimer\u2019s disease research that includes brain donation","volume":"26","author":"Danner","year":"2011","journal-title":"American Journal of Alzheimer\u2019s Disease and Other Dementias"},{"key":"2026010517365192700_CIT0010","doi-asserted-by":"crossref","first-page":"45","DOI":"10.1093\/geront\/43.1.45","article-title":"Recruitment and retention of Latino dementia family caregivers in intervention research: Issues to face, lessons to learn","volume":"43","author":"Gallagher-Thompson","year":"2003","journal-title":"The Gerontologist"},{"key":"2026010517365192700_CIT0011","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1023\/A:1006798316654","article-title":"Working with culture: A qualitative analysis of barriers to recruitment of Chinese American family caregivers for dementia research","volume":"15","author":"Hinton","year":"2000","journal-title":"Journal of Cross Cultural Gerontology"},{"key":"2026010517365192700_CIT0012","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1097\/WAD.0b013e3181f3e059","article-title":"Factors associated with African American and White elders\u2019 participation in a brain donation program","volume":"25","author":"Jefferson","year":"2011","journal-title":"Alzheimer Disease and Associated Disorders"},{"key":"2026010517365192700_CIT0013","doi-asserted-by":"crossref","first-page":"1137","DOI":"10.2105\/AJPH.2006.100131","article-title":"Awareness of the Tuskegee syphilis study and the US presidential apology and their influence on minority participation in biomedical research","volume":"98","author":"Katz","year":"2008","journal-title":"American Journal of Public Health"},{"key":"2026010517365192700_CIT0014","doi-asserted-by":"crossref","first-page":"698","DOI":"10.1353\/hpu.2006.0126","article-title":"The Tuskegee legacy project: Willingness of minorities to participate in biomedical research","volume":"17","author":"Katz","year":"2006","journal-title":"Journal of Health Care of the Poor and Underserved"},{"key":"2026010517365192700_CIT0015","doi-asserted-by":"crossref","first-page":"M1","DOI":"10.1093\/gerona\/54.11.M560","article-title":"Factors associated with brain donation among optimally healthy elderly people","volume":"54","author":"Kaye","year":"1999","journal-title":"The Journals of Gerontology, Series A: Biological Sciences and Medical Sciences"},{"key":"2026010517365192700_CIT0016","doi-asserted-by":"crossref","first-page":"28","DOI":"10.1093\/geront\/gnq063","article-title":"Perceptions, knowledge, incentives, and barriers of brain donation among African American elders enrolled in an Alzheimer\u2019s research program","volume":"51","author":"Lambe","year":"2011","journal-title":"The Gerontologist"},{"key":"2026010517365192700_CIT0017","volume-title":"Focus groups as qualitative research","author":"Morgan","year":"2010","edition":"2"},{"key":"2026010517365192700_CIT0018"},{"key":"2026010517365192700_CIT0021"},{"key":"2026010517365192700_CIT0022","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1002\/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G","article-title":"Focus on research methods: Whatever happened to qualitative description?","volume":"23","author":"Sandelowski","year":"2000","journal-title":"Research in Nursing & Health"},{"key":"2026010517365192700_CIT0024","volume-title":"The immortal life of Henrietta Lacks","author":"Skloot","year":"2010"},{"key":"2026010517365192700_CIT0025","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1177\/1533317512438224","article-title":"The influence of ethnicity and culture on dementia caregiving: A review of empirical studies on Chinese Americans","volume":"27","author":"Sun","year":"2012","journal-title":"American Journal of Alzheimer\u2019s Disease and Other Dementias"}],"container-title":["The Gerontologist"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/gerontologist\/article-pdf\/57\/4\/719\/66266525\/gerontologist_57_4_719.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/gerontologist\/article-pdf\/57\/4\/719\/66266525\/gerontologist_57_4_719.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,5]],"date-time":"2026-01-05T22:37:23Z","timestamp":1767652643000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/gerontologist\/article\/57\/4\/719\/2632102"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,3,2]]},"references-count":20,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2017,8,1]]}},"URL":"https:\/\/doi.org\/10.1093\/geront\/gnv683","relation":{},"ISSN":["0016-9013","1758-5341"],"issn-type":[{"value":"0016-9013","type":"print"},{"value":"1758-5341","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2017,8]]},"published":{"date-parts":[[2016,3,2]]}}}