Crucial training pipeline for Deaf scientists dismantled by NIH funding cuts

From ScienceMag:

When Michelle Koplitz began studying biotechnology as an undergraduate at the Rochester Institute of Technology, she had dreams of one day becoming a doctor. As a Deaf student, however, she didn’t have many role models or mentors in the field who could support her. Still hoping to work in health care, she ended up pursuing a master’s degree at Johns Hopkins Bloomberg School of Public Health. And although Koplitz looks back on that program with fondness, being the only Deaf researcher in a group of hearing colleagues was jarring. “I felt very alone and isolated,” she recalls.

Koplitz knew that, for a Ph.D. program, she would need a community again. She also knew she would find that back in Rochester, New York, which is thought to have one of, if not the, largest per capita populations of deaf and hard-of-hearing people in the United States. When Koplitz returned to the area to pursue her doctorate, she also had the opportunity to plug into a group of programs known collectively as the Deaf Scientists Pipeline. Unlike traditional degree programs, this initiative—a long-standing collaboration between the University of Rochester/University of Rochester Medical Center (UR/URMC) and the Rochester Institute of Technology’s National Technical Institute for the Deaf (RIT/NTID)—provides tailored support for students at every stage of their academic journey, from high school all the way through postdoctoral training. It’s the only pipeline of its kind in the world. 

But in early April, Koplitz got the news she’d been dreading: Four out five National Institutes of Health (NIH) grants supporting the pipeline had been terminated, and the fifth was in danger of being cut as well. Collectively, the programs estimate they will lose about $3.6 million in future support that was committed in the most recent award and renewal cycles—a drop in the bucket compared with the total NIH budget, but absolutely essential to keep the pipeline running. “This is a real step back,” Koplitz says. “I’m afraid that we’re going to lose the little bit of progress that we’ve made.”

According to official termination notices, the reason given for the cuts is changes in priorities at NIH and its parent agency, the Department of Health and Human Services (HHS). “NIH is dedicated to restoring our agency to its tradition of upholding gold-standard, evidence-based science,” an HHS spokesperson said in response to further questions. “As we begin to Make America Healthy Again, we are prioritizing research to identify the root causes of the chronic disease epidemic.”

The Deaf Scientists Pipeline started in 2013 with the Rochester Bridges to the Doctorate Program, which helps students gain the experience necessary to become candidates for doctoral degree programs. That program, which NIH had continuously funded with more than $4.7 million in support to date, has now been terminated 3 years early; the program is estimated to lose nearly $900,000 in future funding. The Rochester Postdoc Partnership (RPP), which began in 2015 and had received about $5 million to date, has also been canceled—1 year early. The same fate befell the Initiative for Maximizing Student Development, which began just 2 years ago to serve doctoral students and was initially slated to run until 2028. Each of these latter programs is expected to lose out on more than $1 million.

“Right when we are seeing the pipeline really taking off with multiple graduates contributing back to it, it is being destroyed,” says Wyatte Hall, who studies language acquisition and deprivation in Deaf children and serves as a mentor to Koplitz, who works in his lab. Hall was the first graduate of the RPP, and he currently serves as co-director of the Future Deaf Scientists program, which helps empower Deaf high school students to explore careers in science and medicine. This component of the pipeline was established just last year under a grant set to run until 2029. Although that funding—totaling just over $250,000—is still officially in place, Hall believes it is only a matter of time before this program is also terminated.

According to a statement from RIT/NTID and UR/URMC, the universities are exploring avenues for appeal, but it’s unclear whether those efforts will be successful. As for other options to restore the pipeline, Hall says, the Deaf community is small and lacks economic power. “There’s likely nothing we can turn to after these cuts to keep the programs,” he says. “The idea that private funding will step in is not something that has been historically realistic for our community.” Even if funding eventually is restored, he adds, it will likely take decades to rebuild.

“If it wasn’t for these programs that are part of the pipeline, I wouldn’t have gotten to where I am now,” says biomedical scientist Sara Blick-Nitko, who researches cancer treatments as a postdoc at UR. “Growing up, I never had a Deaf mentor. I never knew another Deaf scientist.” She was introduced to the pipeline when she was seeking more research experience after her bachelor’s degree in order to pursue a Ph.D. The bridges program got her into lab rotations and gave her experience with networking and presenting her work at conferences. For her postdoctoral training, she relied on funding from the RPP.

One of the most valuable aspects of the pipeline, Blick-Nitko explains, was the financial support for accessibility services, including closed captioning and interpreters in the lab and at conferences. Not all American Sign Language interpreters are qualified to translate complex research topics, for example, and some scientific terms don’t have standardized ASL signs—although some Deaf scientists are working to change that. “It makes me sound like I don’t know my stuff when I present my science with an interpreter that is not aware of science or my work,” Blick-Nitko says.  

People who participate in the pipeline often end up coming back and contributing, Blick-Nitko says, with some alumni serving as mentors to younger students: “You kind of go full circle.” Koplitz, for example, works with students in the undergraduate portion of the pipeline, founded in 2017. “I really enjoyed meeting these younger students, and that was just really cool to see how motivated and how interested they are,” she says. “It was also kind of bittersweet, because I realized I didn’t have this type of support as an undergrad student myself.” Now that the grant—originally slated to run until 2029—has been terminated, that program is expected to lose out on just under $500,000 worth of future support.

After President Donald Trump took office in January, some students and researchers involved in the pipeline began to worry their programs would be targeted because of executive orders attacking initiatives related to diversity, equity, inclusion, and accessibility (DEIA). “I saw the warning signs,” says Athena Willis, a neuroscience postdoc at UR. Willis has been particularly impacted by the grant terminations, because there is no alternative funding available for her to continue. Others in the pipeline are also struggling to find alternative sources of support. Koplitz, for example, initially hoped to apply for an NIH individual fellowship. But the diversity supplement for that program has also been cut—one of many accessibility services that have taken a hit as a result of the Trump administration’s attacks on DEIA.

These attacks have outraged many researchers involved the Deaf Scientists Pipeline, who argue that DEIA efforts are essential for the Deaf community—and that dismantling these initiatives undermines science as a whole. “Individuals with disabilities have a lot to contribute,” Blick-Nitko says. “We have a lot of unique perspectives we bring to the world.”

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