In 2015, acclaimed medical researcher Vivian Chang began studying a large Maryland family, some members of which had a rare childhood form of Lou Gehrig’s disease.
Chang, who lives in Bethesda, Maryland, worked with his family at the National Institutes of Health and divided his time between the lab at the University of Michigan, where he is a tenured professor, and directed genetic research there.
In many ways, she said, it’s a scientist’s dream, funded with millions of dollars in funding from the Howard Hughes Medical Institute, a leading biomedical research and philanthropic organization based in Chevy Chase, Maryland.
That same year, Chan himself was diagnosed with a rare genetic disease – so rare, in fact, that it still hasn’t been named.
She suffered from extreme high blood pressure, began to lose her peripheral vision and balance, and ultimately lost the project’s funding when HHMI decided not to renew her contract in 2018.
Chan filed suit in 2020, alleging that the university discriminated against her because of her disability by cutting off her scholarship. According to Chan’s lawsuit, HHMI initially refused to provide her with assistance and threatened to force her to drop out.
“I think it was hard for them to imagine that someone with a disability could do great things in science,” says Chan, 56.
In a statement, the institute denied Chan’s allegations of discrimination.
“HHMI strongly believes that science should be inclusive of scientists of all backgrounds and perspectives, including scientists with disabilities,” the statement read. “… The record clearly supports our position that Dr. Chen’s allegations are without merit, and we are confident in the integrity of our process for vetting researchers whose appointments are up for renewal.”
Montgomery County Circuit Court earlier this month denied HHMI’s motion for a judge to rule on the case — known as summary judgment — before a trial on Dec. 4. Mediation to try to resolve the case without a trial is scheduled to begin Thursday.
Chan’s case highlights a problem in science that has received far less public attention than the lack of women and minorities in STEM fields: Many disabled scientists report unfair treatment and high barriers to success.
This discrimination is “very, very pervasive,” said Bonnielynn Swenor, founder and director of the Johns Hopkins University Center for Disability and Health Research, which promotes the inclusion of researchers with disabilities.
In 2020, Swenor released data he obtained through a Freedom of Information Act request showing that the percentage of NIH-funded researchers with disabilities fell from 1.9% in 2008 to 1.2% in 2018.
“That should say something,” said Swenor, who co-chaired an NIH committee in 2021 that looked at ways to promote inclusion for people with disabilities.
The National Science Foundation, an independent federal agency, estimated that about 1% of researchers it funded in 2020 had a disability. About 27% of U.S. adults have a disability.
NSF data also shows that within the STEM workforce, people with disabilities are the only underrepresented employee group that did not increase on a percentage basis between 2011 and 2020. Their share remained at 3%.
While similar issues with discrimination against people with disabilities exist in other fields, STEM fields, known for attracting the best talent, present some unique obstacles, said Swenor, the epidemiologist who is blind.
Most labs are not designed to be inclusive of people with disabilities: Scientists are evaluated “by a group of peers who judge their suitability,” and that evaluation is often based on “ableist perspectives,” Swener said.
Particularly in biomedical research, where the priority is disease prevention, treatment, and eradication, disability is often viewed as a “less than ideal state” — something to be avoided, not something to be aspired to, Swenar said.
But there are signs of progress: An NIH committee co-chaired by Swener made recommendations to improve inclusion that were endorsed by NIH leadership.
Last week, the agency implemented one of the recommendations, announcing a proposal to change its mission statement to remove “disability” from the phrase “reducing disease and disability.” Swenor said he believes the current language is ableist because it assumes that all disabilities must be cured or eradicated.
“They’re taking it very seriously,” Swenor said.
NSF also recently announced the allocation of $5 million in grants to fund projects aimed at reducing barriers to full participation of people with disabilities in STEM fields.
Swenor said he hopes others involved in STEM funding and education will follow the government’s lead.
The Howard Hughes Medical Institute is one of the world’s largest funders of biomedical research and “an integral part of the STEM ecosystem,” she said. “It has a huge impact.”
In 2008, Chan was one of only 15 scientists selected nationwide by HHMI to receive a highly competitive, multi-year, renewable, multi-million-dollar research contract. The institute’s website describes these scientists, called investigators, as “pioneers” who “address difficult research questions that may take years to answer.”
Chen, a pediatric neurologist, played a key role in groundbreaking research at the University of Pennsylvania that discovered differences in the sequences of DNA and RNA, the nucleic acids in cells that were once thought to be nearly identical. Funding from HHMI enabled Chen to continue his RNA research, including investigating families with genetic mutations in proteins that affect RNA structure. Chen soon discovered that the family had a rare, slow-progressing childhood form of amyotrophic lateral sclerosis known as ALS type 4.
“As a pediatric neurologist, I quickly realized that this wasn’t a protein problem, it was a disease problem, and we might be able to find a cure,” Chen said.
Around 2012, Chan began to show the first symptoms of a rare genetic condition: His blood pressure rose to dangerously high levels, damage to his blood vessels reduced his peripheral vision, and he suffered falls that made it difficult for him to walk or stand. He was hospitalized and began using a wheelchair.
She said in her lawsuit that HHMI initially denied her request for special accommodations — an additional assistant and remote work in Bethesda to limit travel between the NIH and Michigan labs. HHMI then sent her a letter threatening to terminate her contract if she did not return to work primarily in her lab at the University of Michigan, according to the lawsuit. After she hired an attorney, the institute allowed her to work from home, according to the lawsuit.
The institute denied the allegations in court filings.
According to the complaint, before a scheduled review for Dr. Chang’s contract renewal, the scientific officer responsible for the review “spontaneously raised Dr. Chang’s health issues” and “frankly inquired about her medical prognosis, specifically her vision.” He emphasized that she “had more health problems” than most researchers, according to the complaint, and “strongly recommended that she take a five-year phased-out period, given her health condition,” which resulted in her contract not being renewed. Another HHMI official also raised the option of a five-year phased-out period and “suggested that she would do so, given her health condition,” the complaint states. HHMI denies these allegations.
In late 2018, Chan presented his research before an advisory committee of 20 scientists who will recommend to HHMI whether to renew his contract for another seven years.
A few days later, HHMI notified Chen that it would not renew his contract.
In the lawsuit, Chang alleges that the review committee of her fellow scientists “was adversely influenced by negative assumptions and stereotypes about Dr. Chang’s research.” During their deliberations, “comments were made indicating that doubts about Dr. Chang’s ability to continue her research were discussed,” the suit states. Chang said HHMI had never previously accused her of doing substandard research. HHMI has denied Chang’s allegations in court filings and in statements.
“Each investigator is evaluated to high standards that reflect bold thinking and a commitment to sustained scientific advancement over the long term,” the statement read. “Twenty independent peer reviewers gave Dr. Cheung 14 ratings in the C range and six ratings in the B- range on HHMI’s A to C rating scale, reflecting a strong independent recommendation that her appointment not be renewed.”
In his lawsuit, Chang seeks “full compensation” for “emotional distress and professional damages,” including loss of lab funding and salary.
It also seeks “anti-discrimination measures” to identify and eliminate HHMI’s “unlawful employment practices,” as well as anti-discrimination training for defendants and all of their employees and agents.
After her diagnosis in 2015, Chan used her medical network to find a geneticist who recommended a specific biologic drug to treat her disease. Her symptoms gradually improved, Chan said.
In 2022, she was co-author on five papers. Earlier this year, she received a $2.3 million grant from the Warren Alpert Foundation to lay the groundwork for an international project to sequence all of the RNA in human cells. In her lawsuit, she also noted that she was elected to the National Academy of Medicine and became president of the American Society for Clinical Investigation.
Since becoming disabled, she has been determined to help Maryland families find treatment.
“This has become even more urgent for me, especially now that I’ve been through the treatment myself and understand how much it has changed my life,” Chen said. “It’s really hard to meet patients and find out there’s no cure.”