Legislative Updates

Trump Administration Eliminates Federal Funding for NIH Intramural Research Using Human Fetal Tissue Research, Subjects Extramural Research to Ethics Advisory Board Review

Legislative Update
June 12, 2019

On June 5, the Trump Administration released a new Department of Health and Human Services (DHHS) policy that would eliminate any federal funding for National Institutes of Health (NIH) Intramural Research that uses human fetal tissue, as well as to impose a new Ethics Advisory Board review on NIH research grant applications or current research in the competitive renewal process (Extramural Research) that propose to use human fetal tissue.

Reaction from the research advocacy community was swift, with many organizations commenting that the new restrictions have no scientific or ethical basis since the existing regulatory and legal framework in the United States for overseeing fetal tissue research was carefully developed with input from the public, ethicists, policymakers, and scientists. The International Society for Stem Cell research also commented (in part) that,

"Research using fetal tissue has saved millions of lives through development of vaccines for diseases that once ravaged communities across the world. Today, fetal tissue is still making an impact, with clinical trials underway using cells from fetal tissue to treat conditions including Parkinson's disease, ALS, and spinal cord injury.  The elimination of long-standing federal funding will delay this critical research and set back the development of potential therapies for these and other infectious diseases."”

Reaction from Congress was also swift, as Cong. Mark Pocan (D-WI) and colleagues filed an amendment by the June 7 deadline for consideration during House floor debate of H.R. 2740, the four-bill [Defense, Energy and Water, State-Foreign Operations, and Labor, Health and Human Services (LHHS)] Fiscal Year (FY) 2020 spending package, that would prohibit any funds made available by the bill to convene an Ethics Advisory Board to review proposed/ongoing Extramural Research using human fetal tissue. On June 12, NAEVR and ARVO signed onto a research community letter to Cong. Pocan and colleagues in support of the amendment, which was approved on the House floor on June 13.

In addition to the medical research community supporting Congressional activities within the FY2020 appropriations process to rescind all or part of the new policy, it is also reaching out to DHHS Secretary Alex Azar to reconsider.