Understanding Participation by African Americans in Cancer Genetics Research
Understanding Participation by African Americans in Cancer Genetics Research
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DOI：
10.1016/s0027-9684(15)30172-3
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发表时间：
2012-07-01
影响因子：
3.3
通讯作者：
Halbert, Chanita Hughes
中科院分区：
文献类型：
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作者：
McDonald, Jasmine A.;Barg, Frances K.;Halbert, Chanita Hughes
目的：了解导致癌症预后的种族差异的遗传因素可能会减少癌症发病率和死亡率的种族差异。非裔美国人参与癌症遗传学研究的比例较低，这将限制这一目标的实现。方法：我们对91名非裔美国成年人进行了定性研究，以了解他们对参与癌症遗传学研究的态度，并确定在做出参与这类研究的决定时需要考虑的因素。结果：参与者在做出参与癌症遗传学研究的决定时，会考虑到对自己、家庭成员和社区的潜在好处。然而，对剥削的担忧、对研究人员的不信任以及调查人员的动机也是参与决定的重要因素。个人还将考虑谁有权访问他们的个人信息，以及这些数据会发生什么情况。副作用、后勤问题和获得健康问题知识的可能性也被描述为决策的重要因素。结论：非洲裔美国人在决定参与癌症遗传学研究时可能会考虑一些伦理、法律和社会问题。这些问题应作为招聘工作的一部分加以解决。
Purpose: Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research.Method: We conducted a qualitative study with African American adults (n = 91) to understand attitudes about participating in cancer genetics research and to identify factors that are considered when making a decision about participating in this type of research.Results: Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in cancer genetics research. However, concerns about exploitation, distrust of researchers, and investigators' motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision making.Conclusion: African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in cancer genetics research. These issues should be addressed as part of recruitment efforts.