University of Michigan pediatric neurologist Vivian Cheung made a name for herself studying rare genetic diseases, and in 2008 — when she was on the faculty at the University of Pennsylvania — was hired as a Howard Hughes Medical Institute investigator, an honor for which she received $1 million a year over the next 12 years to further her research. But after Cheung herself developed a genetic condition so rare it doesn’t have an official name, causing her to start losing her vision, HHMI decided to stop funding her.
In a lawsuit filed in January 2020, Cheung, who is now 55, alleged the institute discriminated against her because of her disability. She has difficulty maintaining her balance at times in addition to progressive vision loss, but she claims HHMI refused to provide accommodations that would enable her to continue her research, and pushed her to leave. “I was asked to take a medical retirement,” Cheung told STAT. “I felt that I was being judged for having a disability.”
HHMI, one of the largest private funders of biomedical research, has vigorously denied in preliminary hearings that the decision to end Cheung’s funding had anything to do with her disability, claiming instead that it was due to the caliber of her work.
The case, which is set for trial in December, spotlights an aspect of diversity that has gotten far less attention in the scientific community than expanding representation of women and people of color. Many scientists with disabilities say they face barriers, including how labs are designed. Organizations like HHMI — while publishing data on how many women and people of color they employ and give funding to — are often silent when it comes to how many disabled scientists they support.
The diversity page on HHMI’s website speaks about its 2021 commitment to spend $2 billion to increase gender, racial, and ethnic diversity in science, but makes no mention of disability.
Disabled scientists may also hesitate to talk openly about their disabilities, out of concern about dealing with ableism like what Cheung claims she faced. During a February 2022 hearing, her attorneys pointed to the deposition of a top HHMI official to show the attitudes she encountered. David Clapham, who was HHMI’s vice president and chief scientific officer between 2016 and 2022, said in a 2021 deposition that he “would have concerns” about a blind scientist running a lab, and that scientists he has known who have developed blindness have retired from this role due to their disability.
Alyssa Paparella, a Ph.D. student who founded Disabled in STEM, which offers resources and peer-mentoring opportunities, said the scientific community needs to do more to support researchers with disabilities. Speaking in general about ableism faced by scientists, she said, “Just because institutions and individuals haven’t worked to accommodate disabled scientists previously is not an excuse for the ableism that individuals experience currently.”
A spokesperson for HHMI told STAT that “since this is a personnel matter, HHMI is unable to offer an interview or comment” about Cheung’s claims in the lawsuit. When asked whether the organization’s commitment to diversity includes people with disabilities, the spokesperson again declined to comment, citing the ongoing litigation.
After graduating from Tufts University medical school and completing a residency at UCLA, Cheung moved to the University of Pennsylvania in 1996, where she led groundbreaking research on discrepancies between RNA and DNA sequences, which were originally thought to be nearly identical. She joined the University of Michigan in 2013, where her lab also studies gene regulation and cellular responses to stress, and how dysregulation can lead to neurological diseases in children.
Dr. Robert W. Mahley, a senior investigator at the Gladstone Institutes and professor of pathology and medicine at the University of California, San Francisco, told STAT that Cheung has made extensive contributions in the field of RNA biology.
“Vivian is a truly outstanding scientist who against all odds convinced even the skeptics that RNA is not an exact copy of DNA and that RNA base modifications undoubtedly alter RNA structure and function in health and disease,” said Mahley, who collaborated with her on a recent study. “It is unthinkable to consider that her disability impairs her ability to be a distinguished scientist.”
In addition to being named an HHMI investigator in 2008 — one of only about 250 nationally — Cheung is also a member of the prestigious National Academy of Medicine. HHMI investigators remain at their universities but are employed by HHMI and are evaluated every seven years (formerly five years).
Cheung’s appointment was renewed in 2013, about a year before she learned she had a rare genetic disability. She spent considerable time in the hospital after her symptoms first appeared — running her lab remotely — and when she was released, she used a wheelchair. Soon after, she asked for accommodations: an additional assistant and permission to work remotely, so she could fly less often between the University of Michigan and the National Institutes of Health where she sees patients.
Her request was never directly answered, she said in an interview. Instead, in 2018, she received notice that her funding and role in HHMI would not be renewed. As is the practice for scientists who aren’t renewed, she was given two more years of funding, until 2020.
In court, HHMI has argued that while Cheung is a good scientist, her work has not been the “Olympic-level caliber” required of HHMI investigators.
During a preliminary hearing in February 2022, Chong Park, a lawyer representing HHMI, said “Dr. Cheung received the second-lowest set of scores” when evaluated by a panel in 2018: six B grades and 14 C grades.
None of the reviewers were women of color like herself, however, and most were white men, her legal team stated at a February 2023 preliminary hearing. (Cheung’s suit initially alleged discrimination on the basis of gender and race as well as disability, but the judge as of March 10 decided to keep these claims out of the trial).
Cheung says that since her eyesight problems started, she has continued to be productive and publish her research and editorials in journals. Just in 2022, she co-authored five papers, including one in the Annals of Neurology, and since 2018, papers she co-authored have been cited 3,444 times by other researchers. This week, the University of Michigan announced Cheung has received a $2.3 million grant from the Warren Alpert Foundation to lay the groundwork for an international project to sequence all the RNA in human cells.
Developing a disability later in life can have its challenges but also its benefits. Cheung, who will eventually become blind, has found that it brings her closer to the patients she meets in person at NIH on most Mondays. She is able to talk with them about aspects of disability because she has lived experience, not just because she researches health conditions.
“Some of these are very subtle,” she said. “Like, talking about different wheelchairs, and the ones that are easier in the house doesn’t mean that those are the ones that are easier to use outside.”
Prior to the Covid-19 pandemic, Cheung used to commute weekly between NIH and the University of Michigan because HHMI did not give her accommodations, even though this was difficult for her. Now she Zooms with her team every day. She finds that she is more productive in doing activities like applying for grants and reviewing papers from her home.
Cheung hopes more scientists are able to get accommodations for their disabilities, such as working remotely, but said the effort to make workplaces more inclusive “seems to be lagging” despite the pandemic showing remote work is a good option.
As a scientist who is open about her disability, Cheung hopes to convince some of her colleagues that being disabled “is really a strength rather than a weakness” in biomedical research. And she feels she has an obligation to stand up against what she perceives as discrimination against a disabled person.
“I’m senior enough in the field that I have the responsibility to not just sit on the sidelines,” she said, “but I have to speak up and to hopefully change this type of treatment.”
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