Introduction: Many research programs are challenged to accommodate low-resource research participants’ (LRRP) ancillary care needs when returning genomic research results. We define LRRP as those who are low income, uninsured, underinsured, or facing barriers to act upon the results returned. This study evaluates current policies and practices surrounding return of results (RoR) to LRRP, as well as the attitudes of investigators toward providing ancillary care to LRRP. Methods: A semi-structured interview study was conducted with representatives of 35 genomic research programs nationwide. Eligible programs were returning, or planning to return, medically actionable genomic results to participants. Results: Three content categories emerged from this study, including: (1) RoR structures, (2) barriers to RoR to LRRP, and (3) solutions to meet community and LRRP needs. Three major structures of RoR emerged: (1) RoR Embedded in Clinical Care, (2) RoR Independent of Clinical Care, and (3) Reliance on Clinical Partnerships to Facilitate RoR. Inadequacy of program resources to address the needs of LRRP was commonly considered a significant obstacle. The attitudes and views of informants regarding responsibility to provide ancillary care for LRRP receiving genomic results were highly varied. Some informants believed that genomic sequencing and testing was not a priority for LRRP because of other pressing issues in their lives, such as housing and food insecurity. Research programs differ regarding whether clinical and social support for LRRP is considered within the purview of the research team. Some programs instituted accommodations for LRRP, including social work referral and insurance enrollment assistance. Conclusion: Support to access downstream treatment is not readily available for LRRP in many genomic research programs. Development of best practices and policies for managing RoR to LRRP is needed.
Public Health Genomics

中文翻译：

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将基因组研究结果返还给低资源研究参与者的实践和态度

简介：在返回基因组研究结果时，许多研究计划面临着满足低资源研究参与者 (LRRP) 辅助护理需求的挑战。我们将 LRRP 定义为低收入、无保险、保险不足或面临根据返回结果采取行动的障碍的人。本研究评估了当前围绕向 LRRP 返回结果 (RoR) 的政策和实践，以及调查人员对向 LRRP 提供辅助护理的态度。方法：对全国 35 个基因组研究项目的代表进行了半结构化访谈研究。符合条件的项目正在或计划将医学上可行的基因组结果返回给参与者。结果：本研究提出了三个内容类别，包括：(1) RoR 结构，(2) RoR 对 LRRP 的障碍，以及 (3) 满足社区和 LRRP 需求的解决方案。出现了三种主要的 RoR 结构：(1) 嵌入临床护理中的 RoR，(2) 独立于临床护理的 RoR，以及 (3) 依赖临床合作伙伴来促进 RoR。计划资源不足以满足 LRRP 的需求通常被认为是一个重大障碍。知情人对接受基因组结果的 LRRP 提供辅助护理的责任的态度和观点差异很大。一些受访者认为，基因组测序和测试不是 LRRP 的优先事项，因为他们生活中存在其他紧迫问题，例如住房和粮食不安全。关于 LRRP 的临床和社会支持是否在研究团队的职权范围内考虑，研究计划有所不同。一些计划为 LRRP 提供便利，包括社会工作转介和保险参保援助。结论：在许多基因组研究项目中，LRRP 并不容易获得下游治疗的支持。需要制定管理 RoR 到 LRRP 的最佳实践和政策。
公共卫生基因组学