Community leaders' perspectives on engaging African Americans in biobanks and other human genetics initiatives
Community leaders' perspectives on engaging African Americans in biobanks and other human genetics initiatives
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DOI：
10.1007/s12687-013-0155-z
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发表时间：
2013-10-01
影响因子：
1.9
通讯作者：
Kelber, Sheryl T.
中科院分区：
文献类型：
--
作者：
Buseh, Aaron G.;Stevens, Patricia E.;Kelber, Sheryl T.
关于非裔美国人对生物银行的看法以及围绕它们的伦理问题的信息有限。同样，在成功招募非裔美国人作为生物库捐赠者的能力方面也存在差距。这项以社区为基础的参与性研究的目的是：（a）探讨非裔美国人对遗传学/基因组研究的看法，（B）了解参与这类研究的促进者和障碍，（c）征求他们关于如何吸引和维持非裔美国人参与遗传学倡议的想法。作为混合方法研究的第一阶段，我们在美国一个米德韦斯特城与21名非洲裔美国人社区领袖进行了四个焦点小组。样本包括社区组织的执行董事和著名的社区活动家。按主题分析数据。对生物医学研究持怀疑态度和缺乏信任是关于生物医学研究和生物库的讨论的特点。塔斯基吉未经处理的兴奋剂研究和亨里埃塔缺乏的情况下，影响了他们的愿望，以保护他们的社区免受伤害和剥削。遗传学和家族史之间的联系使遗传学/基因组学研究变得个人化，使对私人事务的干涉与解决方案背道而驰。与会者还对基因组学研究所涉及的伦理问题表示关切，并提请注意他们所在社区以前是如何进行研究的。与会者希望个性化医疗可能会给他们的人民带来健康益处，并提议非洲裔美国人社区有一个“席位”。“他们呼吁基本的尊重、真正的合作、双向教育、透明度和特权以及有意义的福利和报酬。建立信任和克服非裔美国人对参与生物库的恐惧和抵制的关键是尽早和持续地与社区接触，与社区利益相关者建立伙伴关系，以确定研究优先事项，道德研究行为，并保证公平分配基因组学发现的利益。
There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans' perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a "seat at the table." They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.