Experiences at a Federally Qualified Health Center Support Expanded Conception of the Gifts of Precision Medicine.
Experiences at a Federally Qualified Health Center Support Expanded Conception of the Gifts of Precision Medicine.
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DOI：
10.1080/15265161.2021.1891348
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发表时间：
2021-04
影响因子：
13.4
通讯作者：
Crane, Johanna Tayloe
中科院分区：
文献类型：
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作者：
Neuhaus, Carolyn P.;Crane, Johanna Tayloe
Lee（2021）在“礼物的义务”一书中指出，关于基因研究成果返还的伦理思考过于狭隘地集中在个人同意和参与者的“知情权”上。在我们的NIH资助的研究中收集的早期数据在联邦合格的健康中心的所有我们的研究计划招聘支持李的主张，结果的回报应该在从事提供精准医学的道德社区的背景下理解。这个社区不仅由研究人员和参与者组成，还包括资助者、保险公司、医疗保健政策制定者、立法者和“医疗保健企业”内的其他人。李认为，我们应该把参与研究理解为一种“注入而不是不受约束的义务”（59）。重要的是，通过参与研究所表达和产生的义务不仅限于研究人员和参与者，还包括与精准医学有关的更大道德群体中的其他人。我们的初步结果表明了两个相关的发现：第一，与精准医疗有关的道德团体可能也包括参与者的家庭成员;第二，将结果返回给未投保/投保不足的个人，这引发了对健康公正和确保与医疗可诉结果相关的护理责任的严重质疑。我们的研究[NIH R21 HG 010531]检查了美国国立卫生研究院所有人研究计划（AoURP）的参与情况，这是一项前所未有的精准医学计划，目标是从至少100万生活在美国的不同个体中收集遗传，健康，环境和其他数据。通过定性调查在一个联邦合格的健康中心（CIMHC）作为我们所有人的招聘，注册和参与网站，我们的研究旨在了解是什么激励个人注册或不注册AoURP，为什么人们做或不继续参与随着时间的推移，以及注册者如何理解AoURP的承诺，使研究参与者成为“合作伙伴”。自二零二零年三月AoURP因冠状病毒疫情暂停亲自招聘以来，我们的数据收集一直暂停。然而，于2020年1月及2月，我们得以完成与14名参与AoURP活动的CNOHC员工的关键线人访谈。工作人员分享了对参与者报名或拒绝参加的动机的见解。诚然，这是一个小样本;尽管如此，一些新兴的主题支持李的核心主张。首先，我们的研究表明，老年性高血压患者有时有动力参与精准医学研究，因为预期的健康益处不仅对他们自己，而且对他们现在或未来的家人。正如一位工作人员告诉我们的那样，“他们在说，'我想为我的家人，为我的孙子孙女们做这件事。'”这似乎对老年参与者来说尤其如此。正如李所指出的，获得一个人的基因结果往往被认为是参与研究的好处。几位受访者证实，参加“我们大家”的人确实是因为获得了他们的遗传信息。一位工作人员对结果的延迟感到沮丧，他告诉我们：“他们想要回他们的基因结果。他们想要他们签署的东西。”但这些结果的影响往往是在家庭方面，如母亲与遗传疾病谁参加了希望研究将有助于创造更好的照顾
In “Obligations of the Gift,” Lee (2021) argues that ethical thinking regarding return of genetic research results has been too narrowly focused on individual consent and participants’“right to know” their genetic information. Early data collected in our NIH-funded study of All of Us Research Program recruitment at a Federally Qualified Health Center support Lee’s claim that return of results should be understood within the context of a moral community engaged in delivering precision medicine. This community is composed not only of researchers and participants but also funders, insurers, healthcare policymakers, lawmakers, and others within the “healthcare enterprise.” Lee argues that we should understand research participation as a gift “infused, not unfettered, by obligation”(59). Importantly, obligations expressed and created through research participation extend beyond the researcher and participant to others within the larger moral community implicated in precision medicine. Our preliminary results suggest two related findings: first, that the moral community implicated in precision medicine may include participants’ family members, too; and second, that return of results to un/underinsured individuals raises serious questions about health justice and the distributed responsibility to ensure care related to medically actionable findings. Our study [NIH R21 HG010531] examines participation in the National Institutes of Health’s All of Us Research Program (AoURP), an unprecedented precision medicine initiative with the goal of collecting genetic, health, environmental, and other data from at least one million diverse individuals living in the United States. Through qualitative inquiry at one federally qualified health center (FQHC) serving as an All of Us recruitment, enrollment, and engagement site, our study seeks to understand what motivates individuals to enroll or not enroll in AoURP, why people do or don’t continue participating over time, and how enrollees understand AoURP’s stated commitment to engaging research participants as “partners.” Our data collection has been on pause since March 2020 when AoURP suspended in-person recruitment due to the coronavirus pandemic. However, in January and February of 2020, we were able to complete key informant interviews with 14 FQHC staff involved in AoURP activities. The staff shared insights into participants’ motivations for signing up or declining to participate. This is admittedly a small sample; nonetheless, some emergent themes support Lee’s core claims. First, our research suggests that FQHC patients are sometimes motivated to participate in precision medicine research because of anticipated health benefits not just to themselves, but to their current or future family. As one staff member told us,“they’re saying,‘I want to do this for my family, for my grandkids.’” This seemed to be especially true for older participants. As Lee notes, access to one’s genetic results is often framed as a benefit of participation in research. Several interviewees affirmed that FQHC enrollees in All of Us indeed are motivated by accessing their genetic information. One staff member, frustrated by delays in returning results, told us:“They want their genetic results back. They want what they signed up for.” But the impact of these results was often framed in familial terms, such as the mother with a genetic disease who enrolled with the hope that research would help create better care
影响因子：
1.9
作者：
Geissler PW
通讯作者：
Geissler PW
DOI：
10.1080/15265161.2020.1851813
发表时间：
2021-04
期刊：
The American journal of bioethics : AJOB
影响因子：
--
作者：
Lee SS
通讯作者：
Lee SS