• Center on Health Equity and Access
  • Clinical
  • Health Care Cost
  • Health Care Delivery
  • Insurance
  • Policy
  • Technology
  • Value-Based Care

Congress Raises Transparency Issues With FNIH and the CDC Foundation

Article

Congress instructed Foundation for the National Institutes of Health (FNIH) and the CDC Foundation to disclose certain information about donors in their annual reports. However, the FNIH and CDC Foundation have failed to abide by these instructions.

The Foundation for the National Institutes of Health (FNIH) and the CDC Foundation operate as intermediary organizations that facilitate partnerships between private research funders and researchers. Congress instructed these organizations to disclose certain information about donors in their annual reports. However, the FNIH and CDC Foundation have failed to abide by these instructions, raising transparency concerns.

The House Committee on Appropriations specified that these organizations must reveal the source and amount of every gift received. Also, the committee requires that the FNIH and CDC Foundation identify donors whose cash contributions involve restrictions, regardless of the donor’s anonymity, and restrictions placed on the use of the donations. Due to ethical issues that arose in recent years with both foundations, the committee released updated language in the spending agreement to emphasize the existing requirements, and warn the FNIH and CDC Foundation from further negligence.

Concerns were raised when the FNIH terminated a study examining the long-term effects of alcohol consumption. The alcohol industry donated nearly $100 million toward the research, but the project was shut down when investigators discovered that NIH workers inappropriately contacted industry figures—Congress strictly prohibits any contact between the researchers and their private donors.

Other cases that raised ethical concerns with FNIH involved concussion research and research into non-opioid alternatives for pain treatments. To address these concerns, the FNIH either rearranged partnerships or abandoned plans for new ones.

Attention was also drawn to another example of violations by CrossFit, Inc, which observed the disclosures of the FNIH and CDC Foundation and uncovered that both organizations failed to properly document the sources and amounts of donations they received. The chain of gyms and branded fitness regimen has been a major opposing force against the involvement of “Big Soda” in biomedical research.

Russ Greene, director of government relations and research, CrossFit, said in a statement, “We looked over the CDC Foundation’s and FNIH’s disclosures and found they weren’t even close to following the law. Annually reporting the sources, amount and restrictions of each grant they receive—transparency—is the first step in making sure there’s no undue influence on government science and policy.”

CrossFit staff notified a House committee about the FNIH and CDC Foundation’s inability to follow transparency laws, which prompted the House to deliver a message acknowledging the unethical practices of both organizations.

Related Videos
Pat Van Burkleo
Video 1 - "Diagnosing and Understanding the Pathogenesis of Bronchiectasis"
Video 4 - "Challenges in Autoantibody Screening for Type 1 Diabetes"
Jeff Stark, MD, vice president, head of medical immunology, UCB
Video 7 - "Prior Authorization and Access to Targeted Treatment for Ph+ ALL Patients"
Video 7 - "Prior Authorization and Access to Targeted Treatment for Ph+ ALL Patients"
Video 6 - "Community Partnership: Increasing Public Awareness of CVD"
Related Content
© 2024 MJH Life Sciences
AJMC®
All rights reserved.