The role of race and trust in tissue/blood donation for genetic research.

The role of race and trust in tissue/blood donation for genetic research.
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DOI:
10.1097/gim.0b013e3181cd6689
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发表时间:
2010-02
期刊:
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子:
--
通讯作者:
Corbie-Smith G
Corbie-Smith G
中科院分区:
其他
文献类型:
--
作者:
Bussey-Jones J;Garrett J;Henderson G;Moloney M;Blumenthal C;Corbie-Smith G

文献摘要

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公众愿意捐赠组织样本对基因研究至关重要。先前的工作将少数群体地位和不信任与提供样本的意愿降低联系起来。有些人建议招募以前的研究参与者来解决这些障碍。我们提供了来自遗传流行病学研究的数据,并要求提供血液和/或唾液样本:1)测量捐赠组织/血液样本的意愿,2)确定与捐赠样本意愿相关的人口统计学,信任和其他因素,以及3)测量参与未来遗传研究的意愿。我们调查了北卡罗来纳州结直肠癌研究(NCCCS)的参与者,其中包括从同意的参与者中采集生物样本。参与者随后被问及样本提供、对研究人员的信任以及未来的研究参与。与白人相比,非裔美国人不太可能提供血液样本(21%对13%,p<0.05)。在控制了“信任”之后,这种差异不再具有统计学意义(17%对13%,p=0.27)。那些提供样本的人更有可能表达参与未来研究的意愿。尽管先前参与了遗传流行病学研究,但与提供组织样本相关的因素反映了许多先前确定的人口统计学因素(种族、信任)。改善和证明研究团队的可信度以及招募有样本捐赠记录的受试者的干预措施可能会提高未来的研究参与度。
Public willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens. Some have suggested recruitment of prior research participants to address these barriers. We present data from a genetic epidemiology study with a request for blood and/or saliva specimens to: 1) measure willingness to donate tissue/blood samples, 2) identify demographic, trust, and other factors associated with willingness to donate samples, and 3) measure willingness to participate in future genetic research. We surveyed participants in the North Carolina Colorectal Cancer Study (NCCCS), which included biologic sample collection from consenting participants. Participants were later asked about sample provision; trust in researchers, and future research participation. African Americans were less likely to give a blood sample when compared to whites (21% vs. 13%, p<0.05). After controlling for “trust,” this difference was no longer statistically significant (17% vs. 13%, p=0.27). Those who had given samples were more likely to express willingness to participate in future research. Despite prior participation in a genetic epidemiology study, factors associated with provision of tissue samples reflected many previously identified demographic factors (race, trust). Interventions to improve and demonstrate the trustworthiness of the research team as well as recruitment of subjects with a record of sample donation might enhance future study participation.