Unexpected Findings in the Exploration of African American Underrepresentation in Biospecimen Collection and Biobanks
Unexpected Findings in the Exploration of African American Underrepresentation in Biospecimen Collection and Biobanks
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DOI：
10.1007/s13187-013-0586-6
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发表时间：
2014-09-01
影响因子：
1.6
通讯作者：
Albrecht, Terrance L.
中科院分区：
文献类型：
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作者：
Hagiwara, Nao;Berry-Bobovski, Lisa;Albrecht, Terrance L.
在当前的生物样本库计划中，少数种族/族裔的代表性不足。当前的研究利用基于社区的参与性研究来确定影响老年非裔美国人捐赠生物样本意愿的激励因素和障碍。这项标准化电话调查对 78 名居住在底特律大都会地区、年龄在 55 岁或以上的非裔美国人进行，以评估他们捐赠生物样本的总体意愿以及与之相关的因素。大多数参与者愿意捐赠生物样本及其个人信息用于医学研究，并表示当被要求时他们确实捐赠了生物样本。然而，非裔美国人很少被要求参加生物样本库项目。此外，非裔美国人并不像医学研究人员之前认为的那样关心研究剥削或对医学研究人员的不信任。即使非裔美国人担心潜在的研究剥削或对医学研究人员的不信任，这些担忧或不信任并没有转化为实际不愿意参与生物样本库计划。相反，在预测非裔美国人是否愿意为医学研究捐赠生物样本时，医学研究和生物样本库计划的透明度更为重要。研究结果表明，当前生物样本库项目中非裔美国人的代表性不足可能不是因为他们愿意/不愿意参与此类项目，而是因为医学研究人员未能接近他们。此外，研究人员和临床医生应该专注于提高医学研究和生物样本库项目的透明度，而不是改变非裔美国人对它们的潜在负面态度。
Racial/ethnic minorities are underrepresented in current biobanking programs. The current study utilized community-based participatory research to identify motivating factors and barriers that affect older African Americans' willingness to donate biospecimens. The standardized phone survey was administered to 78 African Americans who are 55 years old or older and live in the metropolitan Detroit area to assess their overall willingness to donate biospecimens and what factors were associated with it. The majority of the participants were willing to donate biospecimens, along with their personal information, for medical research and indicated that they did donate biospecimens when they were asked. However, African Americans were rarely asked to participate in biobanking programs. Furthermore, African Americans were not as concerned with research exploitation or as mistrusting of medical researchers as previously thought by the medical researchers. Even if African Americans were concerned over potential research exploitation or mistrust of medical researchers, these concerns or mistrust did not translate into an actual unwillingness to participate in biobanking programs. Rather, transparency in medical research and biobanking programs was more important when predicting African Americans' willingness to donate biospecimens for medical research. The findings suggest that underrepresentation of African Americans in current biobanking programs may not be due to their willingness/unwillingness to participate in such programs but rather due to a failure of medical researchers to approach them. Additionally, researchers and clinicians should focus on increasing the transparency of medical research and biobanking programs rather than changing African Americans' potential negative attitudes toward them.