Including People with Down Syndrome and Intellectual Disabilities in Research That Affects Them
Boston University epidemiologist Eric Rubenstein on why lived experience belongs in the research lab
BU researchers Ashley Scott (center) and Eric Rubenstein (right) partner with co-researchers like Daniel O’Donnell (left) to include the perspectives of people with intellectual disabilities and Down syndrome in their work.
Including People with Down Syndrome and Intellectual Disabilities in Research That Affects Them
Boston University epidemiologist Eric Rubenstein on why lived experience belongs in the research lab
Born with an intellectual disability, Daniel O’Donnell has a job, competes as an athlete, and has so many friends that some call him the “mayor” of the Boston Special Olympics. But even with that independence, medical appointments can be frustrating.
“Sometimes when a doctor asks questions, they ask my mom—and not me,” says O’Donnell, a 25-year-old from Boston’s Hyde Park neighborhood. “But I’m the sick one. Talk to me!”
O’Donnell recently shared that experience with researchers at the Boston University School of Public Health, where he serves not as a study subject, but as part of a research team examining communication and inclusion in healthcare for people with intellectual disabilities and Down syndrome.
The study is being done in the lab of Eric Rubenstein, an SPH associate professor of epidemiology, whose work focuses on improving the lives of people with intellectual and developmental disabilities (IDD), including Down syndrome and autism spectrum disorder.
Rubenstein’s lab studies issues affecting people with IDD across the lifespan—pregnancy (he is currently the principal investigator of a National Institute of Child Health and Human Development study of pregnancy in women with IDD), stress and anxiety, aging, and Alzheimer’s disease, among them. But he believes the research works only if it is grounded in lived experience.
His team uses a model known as co-research, which involves people with intellectual disabilities at every stage of the study, from brainstorming interview questions to drafting easy-to-read summaries of the finished paper. One of O’Donnell’s partners on the healthcare inclusion project is Jennifer Guan, a Greater Boston resident who loves movies, crafting, and traveling; she also has Down syndrome.
While the co-research idea may seem straightforward, Rubenstein says many researchers don’t do it enough.
He recalls attending a Down syndrome research conference where attendees were asked to raise their hands if they personally knew someone with Down syndrome—and only half did.
“These folks work in research labs, but they don’t have a reason to know someone with Down syndrome,” Rubenstein says. “I think that’s where everything is headed, toward that idea that you have to know the people you’re researching.”
A Job Where Co-Researchers Thrive
Ashley Scott, an SPH senior program manager, who oversees the co-research team, emphasizes that the co-researchers don’t just serve as advisors—they help determine which research questions the lab pursues.
“As someone without an intellectual disability, I really have no idea what it’s like to have Down syndrome or have IDD,” Scott says. “Including people on the team who have this lived experience just gives a level of expertise I can never have. Things that matter to them can be brought to the forefront, which makes the research more inclusive and accessible, both in dissemination and throughout the whole process, and in informing along the way.”
Including people on the team who have this lived experience just gives a level of expertise I can never have. Things that matter to them can be brought to the forefront, which makes the research more inclusive and accessible.
She compares their role to that of any specialized team member. Just as a biostatistician contributes specific analytical expertise, co-researchers contribute expertise grounded in lived experience.
The goal is to center issues the community itself prioritizes—coping, mental health, independence, and “adulting”—rather than limiting research to traditional academic interests. The team recruits co-researchers through conferences, personal networks, and a partnership with Boston Children’s Hospital. In January 2026, they published a paper on their co-research model in the British Journal of Learning Disabilities.
Laura O’Donnell, co-researcher Daniel’s mom, says that participating in this work has helped her son thrive. “He loves being part of the team,” she says, “and he feels like he has a purpose.”
Studying Aging in Down Syndrome
The average life expectancy for individuals with Down syndrome has dramatically increased in the last few decades. In the 1960s, many people with Down syndrome died in childhood. Today, average life expectancy is about 60 years, due in part to advances in heart care, deinstitutionalization, and greater social inclusion, Rubenstein says.
But longer lives bring new health concerns. According to the National Down Syndrome Society, adults with Down syndrome often experience “accelerated aging,” developing conditions associated with older adulthood earlier than the general population. If they live long enough, nearly all will develop Alzheimer’s disease.
The reason lies in genetics. The gene strongly associated with Alzheimer’s disease—the amyloid precursor protein gene—is located on chromosome 21. Because people with Down syndrome have an extra copy of chromosome 21, they also carry a copy of that gene, increasing their risk.
One of the Rubenstein lab’s major projects is a five-year National Institute on Aging grant now in its final phase. Using nationwide Medicaid and Medicare data, his team studies health outcomes among older adults with Down syndrome, including Alzheimer’s disease, sleep apnea, and racial inequities. The project has produced 14 papers, offering one of the most comprehensive population-level analyses of aging among people with IDD who rely on public insurance.
Because many adults with Down syndrome are not employed full-time, they sign up for Medicaid and Medicare, Rubenstein says. Data from these programs provide a near-complete picture of this population. The team confirmed patterns seen in smaller clinical samples: dementia typically begins around age 55, survival averages about 5 additional years, and the average age of death is 60.
“But what’s interesting is that we found no real racial disparities, no sex disparities,” Rubenstein says. “It’s almost as if once someone reaches that stage, other factors don’t matter as much. It’s just that this gene is so strong.”
“I Just Want to Help My Friends”
Rubenstein’s path to public health didn’t begin in a classroom or a lab—it started on a baseball field in central New Jersey.
He remembers not being very good at it—“like close-my-eyes-when-I-swung kind of bad,” he says. Seeing that he was frustrated, his parents nudged him toward something slightly different: volunteering with a local program called Buddy Ball, where kids and young adults with developmental disabilities played baseball. He loved it.
That early experience shaped what would become his life’s work. In addition to his research and teaching, Rubenstein has been a Special Olympics coach for 25 years, coaching basketball, softball, football, swimming, track, and bocce across several states. His goal is to one day make it to the USA Games. “I’ve sort of figured, I just want to help my friends,” Rubenstein says. “My research has moved toward that area of improving their quality of life.”
In 2025, he received the Sherman A. James Diverse and Inclusive Award from the Society for Epidemiologic Research, which honors individuals whose work “expands the scope of the field to underrepresented or disadvantaged populations or researchers, and with an impact that has facilitated greater diversity and inclusiveness.”
For Rubenstein, the co-research model is not just good science; it also provides opportunities. “A lot of folks with IDD, when they leave school, they aren’t really challenged anymore,” he says. “Or they don’t have the employment that’s pushing them to do more. We’re offering some skill building and some intellectual challenge, which I really love doing.”
Ultimately, he hopes community-engaged research becomes standard practice.
“Having the community involved in all aspects of research is not something that should be foreign; it’s just about deciding to do it,” Rubenstein says. “It can be slow work, but it makes our science better, now and in the long run.”
