Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.
Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.
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DOI：
10.1080/15265161.2018.1431322
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发表时间：
2018-04
期刊：
影响因子：
--
通讯作者：
Soo-Jin Lee S
中科院分区：
文献类型：
--
作者：
Kraft SA;Cho MK;Gillespie K;Halley M;Varsava N;Ormond KE;Luft HS;Wilfond BS;Soo-Jin Lee S
随着对健康数据和生物样本的精准医学研究的增长，研究机构将需要与患者参与者建立和保持长期的信任关系。虽然信任对所有研究关系都很重要，但精准医学研究的纵向性质在未来研究的具体细节未知时，对促进信任提出了特别的挑战。基于种族和民族多样化患者的焦点小组，我们描述了影响患者信任的几个因素以及建立可信度的潜在机构方法。根据这些发现，我们建议研究机构寻求与患者建立长期信任关系的几个考虑因素：（1）解决历史和经验对信任的作用，（2）关注潜在的群体伤害，（3）解决文化价值观和沟通障碍，（4）将患者价值观和期望纳入监督和治理结构。
With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures.
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DOI：
10.1097/gim.0b013e3181cd6689
发表时间：
2010-02
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Bussey-Jones J;Garrett J;Henderson G;Moloney M;Blumenthal C;Corbie-Smith G
通讯作者：
Corbie-Smith G
影响因子：
3.3
作者：
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通讯作者：
SchochSpana, M
影响因子：
3.7
作者：
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通讯作者：
Jefferson M
影响因子：
17.1
作者：
Fullerton, Stephanie M.;Anderson, Nicholas R.;Fryer-Edwards, Kelly
通讯作者：
Fryer-Edwards, Kelly
影响因子：
1.9
作者：
Buseh, Aaron G.;Stevens, Patricia E.;Kelber, Sheryl T.
通讯作者：
Kelber, Sheryl T.