Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study
Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study
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DOI：
10.1007/s12687-011-0052-2
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发表时间：
2011-09-01
影响因子：
1.9
通讯作者：
Richardson, Lynne D.
中科院分区：
文献类型：
--
作者：
Streicher, Samantha A.;Sanderson, Saskia C.;Richardson, Lynne D.
为了使DNA生物库成为一个有价值的遗传信息库，需要招募来自所有种族和族裔背景的大量参与者。这项研究探讨了主要是西班牙裔和非洲裔美国人参与新生物库的原因，以及他们对遗传研究的一般态度，以及他们对获得基因检测的看法。焦点小组进行了西奈山生物银行参与者招募主要是低收入，少数民族社区。主题指南包括关于西奈山生物库、基因研究和基因检测的问题。所有的焦点小组进行录音，转录，并使用主题分析进行分析。六个焦点小组由43名参与者组成：39名女性和4名男性，年龄在27-76岁之间，家庭收入中位数为20，000美元39，999美元。21名受试者为西班牙裔，20名非裔美国人，1名亚洲人和1名白色人。参与者参与生物银行的原因包括利他主义，个人和家庭利益以及一般的好奇心。虽然有证据表明基因研究和基因检测混为一谈，但大多数与会者对基因研究持积极态度，并表示有兴趣获得个人基因检测结果。与会者希望更多地了解遗传研究，并建议利用各种渠道，如健康博览会来传播信息。少数种族和族裔参与生物银行显然是出于利他主义以及对个人或集体健康利益的渴望。与会者普遍持积极态度，对遗传学和遗传研究的了解有限，并就信息传播机制提出了有益的建议。
In order for DNA biobanks to be a valuable reservoir of genetic information, large numbers of participants from all racial and ethnic backgrounds need to be recruited. This study explored reasons for participating in a new biobank among primarily Hispanic and African American individuals, as well as their general attitudes towards genetic research, and their views on obtaining genetic tests. Focus groups were conducted with Mount Sinai Biobank participants recruited from predominantly lower income, minority communities. The topic guide included questions on The Mount Sinai Biobank, genetic research, and genetic testing. All focus groups were audio recorded, transcribed, and analyzed using thematic analysis. The six focus groups comprised 43 participants: 39 females and four males, aged 27-76 years, with a median household income category of $20,000$ 39,999. Twenty-one participants were Hispanic, 20 African American, one Asian, and one White. Participants' reasons for participating in the biobank included altruism, personal and family benefit, and general curiosity. Although there was evidence of conflation between genetic research and genetic testing, most participants held positive views of genetic research and expressed interest in receiving personal genetic test results. Participants wanted to learn more about genetic research and suggested various venues such as health fairs for disseminating information. Participation in biobanks by racial and ethnic minorities is apparently driven by altruism, and desire for personal or collective health benefits. Participants had generally positive attitudes, limited understanding of genetics and genetic research, and made useful suggestions regarding information dissemination mechanisms.