Rethinking Benefit and Responsibility in the Context of Diversity: Perspectives from the Front Lines of Precision Medicine Research.
Rethinking Benefit and Responsibility in the Context of Diversity: Perspectives from the Front Lines of Precision Medicine Research.
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DOI：
10.1159/000531656
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发表时间：
2023
影响因子：
1.7
通讯作者：
Lee, Sandra Soo-Jin
中科院分区：
文献类型：
--
作者：
Vasquez, Emily E.;Foti, Nicole;McMahon, Caitlin E.;Jeske, Melanie;Bentz, Michael;Fullerton, Stephanie;Shim, Janet K.;Lee, Sandra Soo-Jin
联邦机构已经制定了指导方针，优先考虑精准医学研究（PMR）中不同参与者的招募和保留。以往审查少数群体参与情况的研究表明，潜在利益是一个关键的决定因素。然而，人类受试者研究指南将潜在益处狭义地概念化，强调医学知识的普遍进步。此外，很少有研究提供了定性数据，批判性地研究如何解释或挑战的“效益”的概念在研究实践中。本文探讨了PMR调查人员和一线研究人员的经验，以了解如何收到标准的方法，以受益，有争议的，和谈判的“在地面上”。调查结果来自一个定性项目，该项目在五个美国联邦政府资助的PMR研究中进行。数据收集包括125个有目的的调查人员，研究人员，社区咨询委员会成员和与这些PMR研究相关的NIH项目官员的深入访谈。研究人员报告说，标准的获益方法--依赖于利他主义的前提和逐步推进科学知识的承诺--经常受到质疑。研究人员在他们所参与的社区内未满足的临床，心理和物质需求中经历道德痛苦。许多人认为，更广泛的研究企业有责任更好地满足这些需求。研究人员经常对参与者及其社区的利益提出异议，有时甚至进行谈判，以换取他们提供的数据。这些道德痛苦的经历和这些即兴创作需要系统的补救，不是由个别研究人员，而是由更广泛的研究伦理基础设施。
Federal agencies have instituted guidelines to prioritize the enrollment and retention of diverse participants in precision medicine research (PMR). Prior studies examining participation of minoritized communities have shown that potential benefits represent a key determinant. Human subject research guidance, however, conceptualizes potential benefits narrowly, emphasizing generalized advances in medical knowledge. Further, few studies have provided qualitative data that critically examine how the concept of “benefit” is interpreted or challenged in the context of research practice. This paper examines the experiences of PMR investigators and frontline research staff to understand how standard approaches to benefit are received, contested, and negotiated “on the ground.” Findings are drawn from a qualitative project conducted across five US-based, federally funded PMR studies. Data collection included 125 in-depth interviews with a purposive sample of investigators, research staff, community advisory board members, and NIH program officers associated with these PMR studies. Researchers report that the standard approach to benefit – which relies on the premise of altruism and the promise of incrementally advancing scientific knowledge – is frequently contested. Researchers experience moral distress over the unmet clinical, psychosocial, and material needs within the communities they are engaging. Many believe the broader research enterprise has a responsibility to better address these needs. Researchers frequently take issue with and sometimes negotiate what is owed to participants and to their communities in exchange for the data they provide. These experiences of moral distress and these improvisations warrant systematic redress, not by individual researchers but by the broader research ethics infrastructure.
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影响因子：
1.7
作者：
Raymond MB;Cooper KE;Parker LS;Bonham VL
通讯作者：
Bonham VL
DOI：
10.1186/1747-5341-7-7
发表时间：
2012-01-17
期刊：
Philosophy, ethics, and humanities in medicine : PEHM
影响因子：
--
作者：
Lairumbi GM;Parker M;Fitzpatrick R;English MC
通讯作者：
English MC
影响因子：
13.4
作者：
Neuhaus, Carolyn P.;Crane, Johanna Tayloe
通讯作者：
Crane, Johanna Tayloe
影响因子：
2.2
作者：
Dauda, Bege;Joffe, Steven
通讯作者：
Joffe, Steven
影响因子：
--
作者：
Munung, Nchangwi Syntia;de Vries, Jantina
通讯作者：
de Vries, Jantina