"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research
"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research
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DOI：
10.1038/s41436-018-0032-6
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发表时间：
2019-01-01
影响因子：
8.8
通讯作者：
Magnus, David
中科院分区：
文献类型：
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作者：
Lee, Sandra S. -J.;Cho, Mildred K.;Magnus, David
目的：为了确定患者在考虑参与研究以告知研究保护时是否区分生物标本和电子健康记录（EHR）。方法：我们进行了20个焦点小组，其中包括非裔美国人，西班牙裔，中国人，南亚人和非西班牙裔白色人，用于收集生物标本和EHR数据。结果：我们的研究发现，许多参与者没有区分生物标本和EHR数据。然而，一些与会者提出了对生物标本的具体关切。这些问题包括：由于身体与身份之间的持久联系，需要特别照顾和尊重生物标本;未来可能进行不可接受的研究，特别是克隆人的前景;隐私风险增加;以及可能出现不公正的公司牟取暴利。在那些区分生物标本从EHR数据，许多人支持单独的同意过程，并将限制自己的参与EHR data.Conclusion：考虑到电子病历数据的潜在滥用是一样大，如果不大于，生物标本，需要更多的研究，以了解不同人群之间的态度不同的生物标本和电子病历数据。此类研究应该探索超越同意的机制，可以解决不同的价值观、观点和对患者信息来源的误解，以建立对研究关系的信任。
Purpose: To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections.Methods: We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian, and non-Hispanic white on the collection of biospecimens and EHR data for research.Results: Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data.Conclusion: Considering that the potential misuse of EHR data is as great as, if not greater than, for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives, and misconceptions about sources of patient information to build trust in research relationships.