Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.
Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.
Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom.
■对三个国家财团中联邦资助的PMR研究的研究者和研究人员的有目的样本进行半结构化访谈,以及对研究活动的观察,专注于PM研究人员如何概念化多样性,并在研究阶段实施包容性实践,包括导航ROR。
■受访者(1)验证了ROR的价值是PMR的好处,而其他人(2)质疑在缺乏足够的资源将研究结果转化为针对不同和处境不利人群的医疗保健的情况下,临床可操作结果对个人的益处;(3)在将ROR的假定值用作非临床结果的益处方面表示不确定性;(4)当ROR的价值承诺可能破坏对PMR的信任时,进行了辩论,并转移努力以超越ROR返回价值。
■PM研究人员和调查人员之间的多样性和包容性的概念化提出了独特的道德问题,其中对ROR价值的未经审查的假设为研究招募工作提供了信息,以招募人数较少的人群。缺乏对将ROR转换为可操作信息所必需的资源和基础设施的考虑可能会阻碍值得信赖的社区研究关系。因此,我们主张对ROR实践进行更有意的询问,以提供利益和为谁提供利益。