Dr. Vivian Cheung, a tenured professor and researcher at the University of Michigan and scientist at the NIH, filed a disability discrimination lawsuit against the Howard Hughes Medical Institute. Credit: Ara Hernandez, Keybridge Communications

In 2018 Dr. Vivian Cheung was one of the top researchers in her field–exploring how RNA shapes contribute to the emergence and progression of Lou Gehrig’s disease–and not even 50 years old when she said she was encouraged to
retire by her research funder, the Howard Hughes Medical Institute (HHMI) in
Chevy Chase.

When the Bethesda resident didn’t retire, her contract was not renewed. The
reason, according to Cheung? Her disability.

Cheung, now 56, has a rare genetic disorder that resulted in vision loss and
balance issues beginning around 2012 or 2013. While those symptoms made her
life more difficult, what changed her life the most, she said, was a spinal
cord injury that requires her to use a wheelchair.

Still, she said that, with reasonable accommodations, she can still perform
her research and job effectively. The decision HHMI made does not just hurt
her, she said; it hurts anyone with neurological diseases or disabilities who
wants to pursue their career goals.

“I have patients with neurological diseases, and I have students with
disabilities, and I think I am saddened that an organization that is one of the
most well-endowed foundations in the U.S. would do something like this,” Cheung


Cheung explained that discrimination against people with disabilities is so
widespread, and it’s not just about her: “It’s my patients, my students, my

Cheung was an investigator for HHMI, meaning she received funding for
research. In an email statement Tuesday, HHMI told MoCo360 that her contract
was not renewed because she did not pass the institute’s peer-review assessment
by “an independent advisory panel of distinguished scientists.”

Now, after years of legal back and forth and unsuccessful mediation, a case
will be going to a jury trial beginning in December.


Cheung has a lengthy list of accomplishments from both before and after
symptoms of her disability emerged.

“Dr. Cheung is universally recognized as a pioneering biologist,” Gary
Gilbert, president of Gilbert Employment Law in Silver Spring and attorney for
Dr. Cheung, said in a press release. “She’s been credited with numerous
breakthrough discoveries — which is why HHMI selected her in 2008 to be one of
just a few hundred HHMI investigators in the entire country, a distinction that
comes with roughly $1 million in annual funding and renewed her contract in

Her breakthrough discovery: Determining that there is a huge difference
between DNA and RNA.


“During my early times years at HHMI, we discovered that the RNA sequence is
not an identical copy to DNA,” Cheung said. “We used to think that DNA is just
a blueprint of everything, and RNA is an identical copy.”

That is not all she discovered.

“During the rest of my time at HHMI, we were looking for the reasons that
RNA can be different from its template DNA,” Cheung added. “That led us to
understand the chemical modification of RNA and the importance of the shading
of RNA.”


She said this helped her learn that patients with ALS Type-4, which is what
she mainly focused on, have mutated RNA.

Cheung was also the 2016-2017 president of the American Society for
Clinical Investigation (ASCI), “one of the oldest and most esteemed nonprofit
honor societies of physician-scientists,” according to the website.

John Hawley, the executive director of ASCI, said that in his experience
working with her, she has the utmost respect for both colleagues and patients.


“She was (and remains) a committed advocate for the physician-scientist
community,” Hawley said. “Her drive was nearly indefatigable, which is a word I
don’t use very often. This was true even as she began to encounter health
challenges during her term on Council and after.”

Cheung is a tenured professor and researcher at the University of Michigan,
and she did all her work at her lab there until she found a family in Bethesda
in 2014 with a “unique genetic mutation directly relevant to her research,”
according to a complaint she filed in the Montgomery County Circuit Court.

HHMI and Cheung negotiated an agreement where the National Institute of
Health (NIH) in Bethesda would host her while she did her research on this
family. She would visit the lab in Michigan a few days per week, but on the
other days, she would operate her Michigan lab virtually by telecommuting,
video and teleconferencing, the complaint said.


Also in 2014, she was diagnosed with an “extremely rare multi-system
disease” that does not even have a formal name, the complaint said.

NIH was the only place she could receive continuous treatment and
recommendations, according to the complaint.

Since Cheung had to travel between Maryland and Michigan frequently, she
requested an administrative assistant to help her with travel and to continue
telecommunicating from Bethesda. These were “reasonable accommodations” for
someone in her circumstances, she said in the complaint.


HHMI disagreed.

Then, Cheung said she was approaching her contract renewal in 2018, which
occurs every five years. Her contract was renewed five years prior without any

“Twenty independent peer reviewers gave Dr. Cheung fourteen grades in the C
range and six B- grades on HHMI’s A through C grading scale, reflecting a
strong independent recommendation not to renew her appointment,” HHMI wrote in
an emailed statement.


The panel evaluates an investigator’s “written submissions and a focused
oral presentation,” along with their “scientific accomplishments in the current
review period” and their “future research plans.”

“Each Investigator is assessed against a high standard that reflects our
commitment to bold thinking and continued scientific breakthroughs over time,”
HHMI wrote.

Also, in their emailed statement, HHMI said it “believes strongly that
science needs to be inclusive of scientists from all backgrounds and
perspectives, including scientists with disabilities. Inclusion is a core HHMI
value and a priority across our programs.”


Cheung said that that is not the whole story.

Leading up to this contract renewal, the science officer in charge of her
review raised the issue of her health and “asked Dr. Cheung point-blank what
her medical prognosis was and asked specifically about her vision,” the
complaint said.

Cheung said that in addition to her wheelchair use, HHMI was concerned about
the vision loss her genetic condition could cause, even though Cheung said she
explained that her health had no bearing on how well she could do her job.


She then began the legal process. She first got permission to sue from the
U.S. Equal Employment Opportunity Commission, and when she got the green light,
she filed a complaint in Montgomery County Circuit Court.

According to the complaint, she filed her lawsuit against HHMI on Jan. 24,
2020, arguing that it violated the Montgomery County Human Rights and Civil
Liberties Law and the Maryland Fair Employment Practices Act.

HHMI violated these laws because it declined to renew her contract “based on
false assumptions and stereotypes about her disability and because she had
previously requested a reasonable accommodation,” according to the complaint.


According to the complaint, Cheung seeks “injunctive relief, and to recover
all wages, employment benefits, and other compensation lost or denied due to
Defendant’s violations, as well as compensatory damages, punitive damages,
attorneys’ fees and costs, pre- and post- judgment interest, declaratory relief,
and any other legal or equitable relief this Court deems just and proper to
redress Defendant’s unlawful actions.”

She continued to do her research, and after more than three years of back
and forth the Montgomery County Circuit Court denied HHMI’s motion for a
summary judgment on June 21.

They had mediation on Aug. 31, and the goal was to find reconciliation,
Cheung said. Ultimately, she wanted HHMI to renew her contract, so she can get
the funding she needs to continue her research and help find a treatment for
people with ALS.


However, the mediation was unsuccessful, and the case will be going to a
jury trial, said Ara Hernandez, senior associate at Keybridge Communications in
Washington, D.C., who is serving as Cheung’s media contact.

Cheung said her research is continuing, but on a smaller scale because she
does not have the same funding and resources she had while working with HHMI.

Her trial is scheduled to start on Dec. 4.

“We’re confident that a jury will conclude that HHMI terminated a talented
researcher’s contract not because of performance issues,” Gilbert said, “but
because it didn’t want to make reasonable accommodations for her disability.”