Fifteen articles that take a registry from "a company just emailed us and we do not know what to say" to a written governance packet you can put in front of a board, an IRB, an attorney, and your community.
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Danielle Boyce is a researcher, not an attorney. Nothing in this tool is legal advice, and using it creates no attorney-client relationship. It is educational material written from research and informatics experience. Laws differ by country, state, province, funding source, and data type, and they change. Have a qualified attorney and an IRB or ethics committee review anything you produce here before you sign it or rely on it. Questions or corrections: danielle@boycedatascience.com