向文化多元的研究参与者及死者家属反馈研究结果的考量因素。
Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents.
作者信息
Garrison Nanibaa A
机构信息
Assistant Professor in the Center for Biomedical Ethics and Society and in the Departments of Pediatrics and Anthropology at Vanderbilt University. She received her Ph.D. in genetics from Stanford University and completed a postdoctoral fellowship at the Stanford Center for Biomedical Ethics. She is Diné from the Navajo Nation.
出版信息
J Law Med Ethics. 2015 Fall;43(3):569-75. doi: 10.1111/jlme.12300.
There has been considerable debate on which genomic research results to return to participants and when those results should be returned, but little attention to how those results should be returned, especially to minority and culturally diverse participants. This paper explores the cultural and ethical considerations around returning research results to participants and families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion.
关于哪些基因组研究结果应反馈给参与者以及何时反馈这些结果，一直存在大量争论，但对于这些结果应如何反馈，尤其是对少数群体和文化背景多样的参与者，却很少有人关注。本文探讨了向文化背景多样的参与者及其家庭反馈研究结果时的文化和伦理考量，特别关注研究参与者去世时的相关考量，并提出了有待进一步讨论的要点。
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