Recent National Academies report puts research participants’ rights at risk, say law scholars

In a Policy Forum article appearing in the Oct. 12 issue of Science, leading bioethics and legal scholars sound the alarm about a recent report from National Academies of Science, Engineering, and Medicine. The Academies’ report on “Returning Individual Research Results to Participants” makes recommendations on how to share research results and data with people who agree to participate in research studies and calls for problematic changes to federal law. This report proclaims its support for research participants’ rights but, in reality, creates major new roadblocks to the return of data and results to participants and would roll back important privacy protections people have under current law, according to the analysis in the new Science article.