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Implementing a universal informed consent process for the All of Us Research Program

文献类型: 会议论文

第一作者: Megan Doerr

作者: Megan Doerr 1 ; Shira Grayson 1 ; Sarah Moore 1 ; Christine Suver 1 ; John Wilbanks 1 ; Jennifer Wagner 2 ;

作者机构: 1.Sage Bionetworks, 2901 Third Avenue Seattle, WA 98121, USA

2.Center for Translational Bioethics & Health Care Policy, Geisinger, 100 N. Academy Ave., MC 30-42, Danville, PA 17822, USA

关键词: Informed consent;conflicts of law;choice of law;ELSI;bioethics

会议名称: Pacific Symposium on Biocomputing

主办单位:

页码: 427-438

摘要: The United States' All of Us Research Program is a longitudinal research initiative with ambitious national recruitment goals, including of populations traditionally underrepresented in biomedical research, many of whom have high geographic mobility. The program has a distributed infrastructure, with key programmatic resources spread across the US. Given its planned duration and geographic reach both in terms of recruitment and programmatic resources, a diversity of state and territory laws might apply to the program over time as well as to the determination of participants' rights. Here we present a listing and discussion of state and territory guidance and regulation of specific relevance to the program, and our approach to their incorporation within the program's informed consent processes.

分类号: q811

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