Disability lawsuit lands Howard Hughes Medical Institute in court

A legal case involving allegations stretching back a decade is finally making its way to court. The lawsuit, involving RNA biologist Vivian Cheung and her former employer, the Howard Hughes Medical Institute (HHMI), is set to begin on 4 December. Cheung alleges that the organization discriminated against her by failing to make reasonable accommodations, and by withdrawing her funding after she was diagnosed with a rare genetic disorder. Representatives of the HHMI, which is based in Chevy Chase, Maryland, say that the institute did not renew her grant because her research was no longer of the calibre expected of its investigators, and court documents suggest that the institute’s legal team will adopt a similar defence.

The HHMI is one of the world’s largest private funders of fundamental biomedical research, supporting around 260 scientists at universities across the United States. Cheung, who is now at the University of Michigan, Ann Arbor, joined those ranks in 2008 as a result of discoveries she made in the field of RNA biology as a faculty member at the University of Pennsylvania in Philadelphia. Before she lost her grant in 2018, the HHMI supported roughly 90% of her research. The hearing is expected to run for about eight days. Here’s what you need to know about the background to the case.

The case against the HHMI

Cheung first received one of the HHMI’s ‘prestigious investigator’ awards in 2008, on the basis of her research untangling previously unseen differences between DNA and RNA. Shortly after her grant was renewed in 2013, Cheung moved to the University of Michigan and began studying gene expression in rare paediatric diseases, splitting her time between her laboratory in Ann Arbor and a hospital in Maryland, where she was seeing a family with a gene mutation relevant to her research. It was during this time that Cheung was herself diagnosed with a rare genetic disorder that affects her vision and connective tissue.

At no point, Cheung says, did she feel unable to continue her work, and her colleagues report that she remained an active collaborator. Markus Hafner, an RNA molecular biologist at the US National Institute of Arthritis and Musculoskeletal and Skin Diseases in Bethesda, Maryland, says that “her disability absolutely had no impact on her science — she was capable of running her lab, of mentoring people, of putting together research projects”.

Collection: Disability and ableism in science careers

Cheung did reach out to the HHMI near the end of 2015 to request two accommodations: an assistant to help with travel between Michigan and Maryland, and a continuation of the arrangement that allowed her to run her lab on a hybrid schedule, which she had done since 2014. These requests were denied, and Cheung was told that she risked breaching the HHMI’s policy if she did not return to Michigan full time. She ultimately withdrew her request for an assistant, and the two parties reached a compromise that allowed her to continue splitting her time.

In 2018, Cheung’s grant was due for renewal again, and she took a call from Philip Perlman, the science officer in charge of her renewal. Court documents reveal that during a conversation about her upcoming review, he asked questions about her health and urged her to consider a five-year “phase-out” to wind down her work, rather than “risk” the renewal process. HHMI spokesperson Michael Czin says talk of the phase-out came up only because Cheung had requested information about the option. Cheung ultimately decided against it, noting that “when you take a medical phase-out, you also have to sign a statement saying that because of a medical condition, you can no longer do science. I certainly was not about to say that, and I certainly didn’t feel that way.”

Cheung wasn’t surprised when her funding was ultimately terminated. “I felt much more confident about my research going into my review the second time, but it just felt as though [the review panellists] had already made up their minds.”

How has the HHMI responded?

The institute denies Cheung’s allegations. Czin says that she underwent “the same process followed for all other scientists seeking an additional term as HHMI investigators”. Cheung’s grant was not renewed, he says, “because her application and presentation did not meet HHMI’s high expectations for investigators”. That presentation, court documents show, scored 14 Cs and 6 Bs — among the lowest in a cohort of 16 investigators who were applying for renewal at the time.

Michael Botchan, a cell and molecular biologist at the University of California, Berkeley, who was the lead reviewer for Cheung’s 2018 renewal process, stated in an e-mail to Nature that “there was absolutely nothing either before, after or during the review process that included anything about Dr. Cheung’s disability”.

In addition to her disability claim, Cheung originally alleged discrimination based on her sex, race and national origin as an Asian American woman, but judges dismissed the majority of those claims during pretrial hearings. As evidence presented during those hearings, her legal team referred to an internal HHMI study from 2014 that analysed 731 renewals over 14 years and identified a preference for renewing the grants of men over women and white people over other people of ethnic origins — findings that seemed to be reflected in Cheung’s renewal cohort, court documents show. Two judges failed to find the allegations credible, and similarly denied a preliminary injunction that would have prevented the HHMI from ending Cheung’s term as an investigator.

The legal perspective

Orly Lobel, an employment and labour-policy law researcher at the University of California, San Diego, says that it’s rare for cases such as this to make it to trial, because disability law has lagged behind US legislation concerning other forms of discrimination. The Americans with Disabilities Act was passed only in 1990, decades after similar impactful legislation such as the 1964 Civil Rights Act.

Disability cases are difficult to prove, and are complicated by the fact that they’re often tied up with other forms of discrimination, Lobel says.

Why does the case matter?

Disability campaigners say that Cheung’s case holds significance for other disabled scientists, who have long struggled to gain recognition and empathy in a field that has narrow definitions of success. Uma Chatterjee, a neuroscience PhD student at the University of Wisconsin–Madison and a disability advocate, says that scientists navigating chronic illnesses or disabilities often keep their diagnoses secret owing to stigma.

Academia’s ableist culture laid bare

The HHMI has stated that the continued pre-eminence of US science depends on “attracting, educating, mentoring, and advancing people from all backgrounds”. In 2021, it announced a US$2-billion pledge to foster environments in which everyone can thrive. The institute values diversity across the full spectrum of personal characteristics and identities, including people with disabilities, says Czin.

Czin says that the legal landscape surrounding disability status is “complex”, and that the Americans with Disabilities Act prohibits the HHMI from asking applicants to disclose their status on applications. The reality, Chatterjee says, is that disabled scientists end up getting left out of the conversation.