Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.
Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.
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DOI：
10.1002/eahr.500029
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发表时间：
2019-09-01
影响因子：
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通讯作者：
Brothers, Kyle B
中科院分区：
文献类型：
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作者：
Childerhose, Janet E;Finnila, Candice R;Brothers, Kyle B
翻译研究环境中“参与式”研究的正式和非正式框架的扩展引起了新出现的和实质性的规范问题。在这篇文章中，我们借鉴了与全国翻译基因组研究网站联盟成员一起进行的焦点小组研究的结果。目标是对非正式参与者参与做法进行分类，探索这些做法的公认根源以及研究人员采用这些做法的动机，并反思其伦理影响。我们了解到，参与者参与是研究人员刻意采取的策略，既是为了实现工具性研究目标，也是为了应对过去的研究不公正而以不同的方式进行研究。虽然翻译基因组研究中使用的许多参与者参与实践并不新鲜，但通过更仔细地检查这一背景下参与者参与的具体轮廓，可以获得重要的见解。这些做法似乎是由遗传咨询师的专业培训以及注册临床基因组学研究的参与者的兴趣和需求决定的。这种参与式研究原则的当代应用的轮廓不仅与临床基因组学研究有关，而且与广泛的翻译研究有关，特别是关于临床研究人员社区如何解释尊重人的原则。我们的发现引发了关于这些实践管理的规范性问题，以及关于其他专业的临床研究人员是否以及如何也参与到翻译研究环境中的社会学问题。
The expansion of both formal and informal frameworks of "engaged" research in translational research settings raises emerging and substantial normative concerns. In this article, we draw on findings from a focus group study with members of a national consortium of translational genomic research sites. The goals were to catalog informal participant engagement practices, to explore the perceived roots of these practices and the motivations of research staff members for adopting them, and to reflect on their ethical implications. We learned that participant engagement is a deliberate strategy by research staff members both to achieve instrumental research goals and to "do research differently" in response to past research injustices. While many of the participant engagement practices used in translational genomic research are not new, important insights can be gained through a closer examination of the specific contours of participant engagement in this context. These practices appear to have been shaped by the professional training of genetic counselors and by the interests and needs of participants who enroll in clinical genomics studies. The contours of this contemporary application of engaged research principles have relevance not only to clinical genomics research but also to translational research broadly, particularly for how communities of clinical researchers are interpreting the principle of respect for persons. Our findings invite normative questions about the governance of these practices and sociological questions about whether and how clinical researchers in other professions are also engaging participants in translational research settings.