The ASBMB supports NIH recommendations for disability inclusion

The American Society for Biochemistry and Molecular Biology applauds the recent National Institutes of Health Subgroup on Individuals with Disabilities report on actions the agency should take to support disabled people in the scientific workforce.

The Dec. 30 report’s nine recommendations aim to identify and eliminate structural ableism, increase inclusion of disabled people at all levels and ultimately ensure the future biomedical workforce is more representative of the United States population.

The ASBMB supports the subgroup’s recommendations and urges the NIH to take two immediate actions: incorporate anti-ableism into all NIH diversity initiatives and communications, notably the agency’s mission statement, and establish funding opportunities for disability research.

Furthermore, the ASBMB implores the NIH to implement the subgroup’s recommendations quickly and is looking forward to working with NIH as it ensures the biomedical research enterprise is more inclusive and equitable.

The subgroup’s recommendations were:

1. Update the NIH mission statement
2. Establish an NIH Office of Disability Research
3. Establish an NIH Disability Equity and Access Coordinating Committee
4. Develop an internal, NIH-wide effort to identify and address any structural ableism
5. Review policy, culture and structure to identify opportunities to promote disability inclusion in the NIH-funded research workforce
6. Expand efforts to include disability communities and the perspectives of disabled people
7. Conduct research on disability health and healthcare disparities and equity
8. Ensure that disability inclusion and anti-ableism are core components of all NIH diversity, equity, inclusion, and accessibility efforts
9. Maintain accountability for disability inclusion efforts

Individuals with disabilities make up 26% of the U.S. adult population, according to the Centers for Disease Control and Prevention. However, their representation in science remains low. The National Science Foundation found in 2019 that 9% of academic scientists self-reported having disabilities. Meanwhile, only 1.2% of NIH-funded principal investigators reported having disabilities.

When the subgroup was formed, it was tasked with identifying “strategies to enhance data collection focused on individuals with disabilities in the scientific workforce,” an acknowledgement that data are lacking and that it is difficult to create and implement policy solutions without fully understanding the challenges and barriers scientists with disabilities face.

The report stated, “Many aspects of scientific research are inaccessible for disabled researchers, including laboratory facilities, research instruments, meeting or conference events, and publication or computing platforms. Researchers with invisible disabilities often do not disclose their disability for fear of discrimination, and therefore may not receive necessary accommodations.”

Disabled scientists are a vital part of the scientific workforce. They conduct important research, ask important questions and provide unique scientific perspectives.

The subgroup’s recommendations are a significant step in the right direction.