Medical Research

Federal Funding for Medical Research

If Congress fails to adequately fund the National Institutes of Health (NIH), the United States is at risk of losing a generation of young researchers. This loss threatens advances in medicine, both at the bench and at the bedside, and places the United States at risk of losing its global competitive edge.

In the current budget environment funding for medical research is at risk as lawmakers are being forced to make spending cuts. It is important that medical research advocates, including the pediatric gastroenterology community, use the power of their collective voice to remind lawmakers that they have choices when it comes to budget priorities and that sustained funding for medical research conducted through the NIH is critical.

Protections for Human Research Subjects

On July 26, the Department of Health and Human Services (HHS) released an advance notice of proposed rulemaking (ANPRM) to request comment on how current regulations for protecting human subjects who participate in research might be modernized and revised. HHS is proposing to revise the Common Rule, which encompasses all research activities.

To better align the Common Rule with privacy standards under the Health Insurance Portability and Accountability Act (HIPAA), HHS is considering categorizing all research involving the primary collection of biospecimens, as well as storage and secondary analysis of existing biospecimens, as research involving identifiable information. NASPGHAN is concerned with the potential implications that changes to the Common Rule could have on pediatric research. The comment period on the ANPRM closed on October 26. Next, HHS will issue a proposed rule, which will also provide opportunity for public comment, followed by a final rule.