STAT+: They advised federal health agencies on the ethics and impact of scientific research. They’re no longer wanted

For the past two years, a dedicated group of scientific experts, clinicians, and patient advocates have been collaborating to enhance community involvement in research funded by the National Institutes of Health (NIH). During their recent presentation of a strategic plan to NIH Director Jay Bhattacharya, they received praise for tackling a critical issue: restoring public trust in clinical research. This recognition was particularly perplexing for the panelists as they learned this meeting would mark the conclusion of their work.

The advisory body, NExTRAC, was formed in 2019, replacing the well-regarded Recombinant DNA Advisory Committee (RAC). Since the mid-1970s, RAC has played a pivotal role in overseeing major developments in genetic engineering, including the introduction of synthetic insulin and the early stages of gene therapy in clinical settings, thus contributing significantly to current advancements. Over the last five years, NExTRAC addressed various ethical and biosafety challenges, including CRISPR gene drives and innovative applications of personal health data. However, in May, committee members were informed by Bhattacharya via email that their group would be disbanded as part of an initiative to enhance NIH efficiency.

It now remains uncertain how or whether the NIH intends to promote open discussions surrounding scientific and ethical matters related to emerging biotechnologies. The dissolution of NExTRAC is aligned with a broader trend of diminishing scientific advisory roles and patient input under the current administration’s mission to streamline the federal government. Since the beginning of the year, the Trump administration has dissolved nearly 40 advisory committees that support various agencies within the Department of Health and Human Services, based on a federal database.