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Advancing Collaborative Genetic Research: Ethical and Policy Challenges

Hastings Investigator: Karen Maschke
Principal Investigator: Suzanne Rivera, Department of Bioethics, Case Western Reserve University
Funder: National Human Genome Research Institute

Collaborative multi-institutional genetic research is essential to advancing genetic science, and it often involves use of biospecimens contributed by human volunteers and stored in repositories (biobanks). But such research can be impeded or prevented by variations in institutions’ policies for protecting human subjects who have donated biospecimens. This project defined the range and variation of policies and practices at institutional review boards (IRBs) for assuring such protections, with an emphasis on informed consent and the sharing of biospecimens and the data they contain. The focus was on policies and practices at medical research institutions in the National Institutes of Health’s Clinical and Translational Science Award (CTSA) consortium. In addition, stakeholders’ perspectives about their IRB policies were gauged through interviews with IRB leaders and genetic researchers at these institutions.