Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.
Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.
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加拿大研究伦理委员会领导层对向个人及其家庭返还基因研究结果的态度。
DOI：
10.1111/jlme.12293
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发表时间：
2015
期刊：
影响因子：
--
通讯作者：
Beskow,LauraM
中科院分区：
文献类型：
--
作者：
Fernandez,ConradV;O'Rourke,PPearl;Beskow,LauraM
在基因研究激增的背景下，利用更加快速和廉价的测序和生物信息学平台，将个体基因结果返回给研究参与者已被广泛讨论。迄今为止，许多共识声明指导研究人员了解向参与者提供基因组研究结果的义务的广度和限制。通常，这些建议植根于结果的临床有效性、可操作性和潜在的健康后果，并以参与者的知情同意为基础。一个新出现的讨论是一个具有挑战性的问题，即研究人员可能在多大程度上额外负责向研究参与者的家庭成员提供结果。一些人认为，随着结果的重要性和可操作性的增加，对亲属的道德义务也随之加强，而另一些人则声称，对近亲的义务应该遵循临床模式，即共享基因结果的决定权落在患者身上。 Wolf 等人在本期 JLME 中详细反思了在考虑这种责任是否存在以及如何履行这一责任时出现的许多道德问题。
The return of individual genetic results to research participants has been widely discussed in the context of an explosion of genetic research utilizing an ever more rapid and inexpensive array of sequencing and bioinformatics platforms. To date, a number of consensus statements guide researchers as to the breadth and limits of their obligations for offering genomic research results to participants. Typically these recommendations are rooted in the result’s clinical validity, actionability, and potential health consequences, and are predicated on the informed consent of the participant. An emerging discussion is the challenging question of the degree to which researchers may additionally have responsibility for offering results to family members of the research participant. Some have argued that ethical obligations to relatives intensify as the significance and actionability of the result increase, while others claim that obligations to next of kin should follow the clinical model where the decision to share genetic results falls to the patient. A detailed reflection on the many ethical issues that arise in considering whether such a responsibility exists, and if so how to honor it, is presented in this issue of JLME by Wolf et al.
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