This project convened a multidisciplinary Investigator team and Working Group with expertise in genomic research and biobank management as well as medicine, law, bioethics, and empirical methods. The project conducted empirical research on current biobank policies and practices to inform our normative recommendations. We refined a preliminary list of biobanks and searched the websites of all identified biobanks for policies on return of IFs and IRRs. To supplement the search process, we also e-mailed the manager or director of identified biobanks and requested relevant documents. The results of that empirical research are reported in Johnson, Lawrenz & Thao.3 We also conducted a comprehensive literature search, reviewing relevant regulations, guidance documents, and law. We developed a project website to share bibliographic materials and work products with the Working Group.
