Date published: March 11, 2021
Autism does not discriminate. It affects people of different races and ethnicities equally. But much of what scientists know about the genetics of autism comes from people of European descent, who participate in larger numbers in research studies.1
SPARK, a genetic study of autism, is trying to change that. SPARK has launched a pilot study at four hospital clinics across the United States to discover ways to increase racial and ethnic diversity in genetic research.
SPARK research sites, located at University of California, Los Angeles (UCLA), University of Mississippi Medical Center, Children’s Hospital of Philadelphia, and Texas Children’s Hospital, are learning how to increase the participation of Black, Asian American, and Latino families in SPARK. Many of these families are underserved, meaning that they have less access to health care or other resources. Researchers at those four sites have spoken with parents of children and adults on the spectrum, distributed surveys to doctors and community members, and met with groups representing minority families.
“If we can increase representation from racially and ethnically diverse families, then we are better able to answer the question of what causes autism across different groups of people,” explains Amanda C. Gulsrud, Ph.D., clinical director of the UCLA Child and Adult Neurodevelopmental Clinic, part of the diversity study. “I imagine we may find differences.”
Removing Barriers and Building Trust
It is important to find and remove barriers to participation, and to build trust within communities, according to researchers involved in the SPARK diversity study. “One theme in our research was that, if we want to do a better job of getting the message out about SPARK, then information needs to come to families through a trusted source in their community,” Gulsrud says.
Trusted sources of information may vary by community, she says. For example, some Asian Americans said that they would trust genetic research information that came from their doctors. Some recent immigrants also said that they would feel more comfortable with research information provided in their first language, she says.
Some Black parents said that they are more likely to trust information from other parents who understand their experiences. According to Gulsrud, one parent told the UCLA researchers, “If there is someone that walked through the woods already … I would take that advice and trust that person because they’ve been through it. Someone that doesn’t have children and has a Ph.D. telling me [to participate in research] – they don’t know the bumps and bruises of a special needs parent.”
Distrust of medical research in the Black community may stem from historical events, such as the Tuskegee Study, and current experiences in health systems.2 In the Tuskegee Study, which ran from 1932 to 1972, a government agency withheld treatment for syphilis from poor Black men in Macon County, Alabama. This led to important changes in how medical research is conducted.
Forming Partnerships with Communities
At UCLA, SPARK team members used the framework of Community Partnered Participatory Research and joined with community groups that represent Black, Asian American, and Latino families, Gulsrud says. Some of these efforts began before the pandemic.
SPARK team members meet monthly with community groups, and they have office hours in those communities to make it easier for families to register for the study, Gulsrud says. “It really all comes back to making sure we’re working with the community, that we’re really partnering together,” she says.
In Mississippi, SPARK researchers took a similar approach to reach Black families who live throughout the state, including rural areas, says Dustin E. Sarver, Ph.D., clinical director at the University of Mississippi Medical Center (UMMC).
The Mississippi site joined with a half dozen community organizations, which helped to find families who were interested in joining SPARK. Then a research assistant from UMMC would contact those families and meet with them in their communities, Sarver says.
As part of their diversity effort, researchers wanted to learn what doctors thought about informing their patients with autism about SPARK. In Pennsylvania, the Children’s Hospital of Philadelphia (CHOP) created a survey for healthcare providers. Other SPARK sites, including Texas Children’s Hospital, also distributed that survey. Texas Children’s created a board, composed of six parents and two graduate students, to advise SPARK on how to increase diversity in the study (pictured above).
In Philadelphia, researchers “wanted to learn what the community needs so we could go in ― not as outsiders ― but really as partners,” says Juhi Pandey, Ph.D., a pediatric neuropsychologist at CHOP.
CHOP spoke with Black and Latino parents of children on the spectrum. “They said, ‘You can’t dip in and out of our community. You need to be a constant presence and a constant member of our community. You’re not just coming to us when you need us but also, we can turn to you when we need you,'” Pandey recalls. Families are interested in research that leads to autism advocacy and meets their needs, she says.
Many underserved people wanted to know if SPARK could connect them to autism resources and referrals in their community, says Pandey and Gulsrud.
Researchers can work with healthcare providers to help make those connections, Gulsrud explains. “That’s the power of academic and community partnerships.”
Photo of the SPARK Family Advisory Board at Baylor College of Medicine and Texas Children’s Hospital, courtesy of the Kochel Lab for Clinical Autism Research.