Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.
Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.
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DOI：
10.1159/000516782
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发表时间：
2021
影响因子：
1.7
通讯作者：
Bonham VL
中科院分区：
文献类型：
--
作者：
Raymond MB;Cooper KE;Parker LS;Bonham VL
许多研究计划在返回基因组研究结果时面临着适应低资源研究参与者(LRRP)辅助护理需求的挑战。我们将LRRP定义为那些低收入、没有保险、保险不足或面临根据返回的结果采取行动的障碍的人。这项研究评估了当前围绕LRRP的结果返回(ROR)的政策和做法，以及研究人员对向LRRP提供辅助护理的态度。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向参与者退还或计划退还可医学操作的基因组结果。这项研究得出了三个内容类别：(1)ROR结构，(2)ROR对LRRP的障碍，(3)满足社区和LRRP需求的解决方案。ROR出现了三个主要结构：1)嵌入临床护理的ROR，2)独立于临床护理的ROR，3)依赖临床伙伴关系促进ROR。方案资源不足，无法满足LRRP的需求，通常被认为是一个重大障碍。关于为接受基因组结果的LRRP提供辅助护理的责任，知情者的态度和观点差异很大。一些信息者认为，基因组测序和检测不是LRRP的优先事项，因为他们生活中的其他紧迫问题，如住房和粮食不安全。对于LRRP的临床和社会支持是否被考虑在研究团队的范围内，研究计划存在差异。一些方案为LRRP提供了便利，包括社会工作转介和保险登记援助。在许多基因组研究计划中，LRRP并不容易获得对下游处理的支持。需要制定将ROR管理为LRRP的最佳做法和政策。
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. 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. Three content categories emerged from this study: (1) RoR structures, (2) Barriers to RoR to LRRP, (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. Informant attitudes and views 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. 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.
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DOI：
10.1177/1740774518792277
发表时间：
2018-10
期刊：
Clinical trials (London, England)
影响因子：
--
作者：
Cho HL;Danis M;Grady C
通讯作者：
Grady C
研究人员对遗传研究中偶然发现的披露的观点。
DOI：
10.1525/jer.2010.5.3.31
发表时间：
2010-09
期刊：
Journal of empirical research on human research ethics : JERHRE
影响因子：
--
作者：
Meacham MC;Starks H;Burke W;Edwards K
通讯作者：
Edwards K
影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
影响因子：
2.7
作者：
Groisman, Iris Jaitovich;Mathieu, Ghislaine;Godard, Beatrice
通讯作者：
Godard, Beatrice
影响因子：
2.7
作者：
Dixon-Woods, Mary;Tarrant, Carolyn;Kenyon, Sara
通讯作者：
Kenyon, Sara