Kaiser Surveys the Gene Pool for Sources of Autism
The HMO is gathering genetic material from 5,000 of its member families to further understanding of autism spectrum disorders.
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For example, the biobank could hold the key to identifying biomarkers for autism, paving the way for a blood test that could detect it much earlier and more effectively than the subjective and time-consuming behavioral analysis doctors rely on for diagnosing it today. Or biobank investigations could lead to improved methods of care for the disorder. “We don’t know what treatments help which kids and why,” Croen said about currently available therapies and services. She contended that what the biobank reveals about autism could allow the medical community “to be much more efficient with our resources and much more efficient with time, and hopefully have much better success with interventions.” And insights the biobank yields about genetic and environmental risk factors might begin to answer what Croen calls “the million-dollar question”: What causes autism?
Obviously, expectations run high about the biobank. “I think it’s going to be a really widely used resource and could potentially have really major impact and move the field forward,” Croen predicted.
She acknowledged that other projects have assembled large databases of genetic material from people with autism, but touted Kaiser’s as exceptional for several reasons. The intended size is notable, as is the approach of including parental information. However, what is truly remarkable about this biobank pertains to the clinical records associated with each participant, since the chance to consult detailed medical histories vastly expands what researchers can learn from the samples and surveys. Moreover, Croen pointed out that Kaiser’s membership pool reflects strong racial and socioeconomic diversity, furnishing a necessary balance for obtaining scientifically valid results. Relative to the disorder’s broader statistical patterns, “Our demographic characteristics within our autism population line up exactly with what you’d expect,” she said.
While the health-care provider’s membership rolls hold an abundance of qualified study candidates, Croen’s team still must put in the work of recruiting them into the biobank. This means mailing batches of invitation letters, following those up with phone calls, and possibly assisting participants with signing up, submitting a sample, or filling out the surveys. The first batch of invitation letters went out in July, starting a race against time; Croen’s team faces a three-year deadline to attain the ambitious enrollment goal of 5,000 families.
Whether they reach that target depends heavily on the willingness of families to participate. One parent needing no persuading is Joanna Jaeger of Milpitas, who serves on Kaiser’s Community Advisory Board for Autism Research and whose 23-year-old son, Alex, has autism. As a tireless advocate on behalf of Alex and for individuals with disabilities in general, Jaeger champions the value of medical investigations of all kinds and hopes to maximize the public’s involvement in them.
“I’ve always really encouraged people to sign up, because you may learn something about your own child, but you may also allow the community and the world to learn something significant,” she said, adding that, regarding her own family, “We have participated in as many autism studies as we qualify for.”
Compared with other studies she has joined or consulted on, Jaeger considers the biobank process much easier for participants to complete. But aside from logistical convenience, she emphasized the basic importance of contributing to the progress of autism research and providing medical professionals with the tools to better understand and treat the disorder.
“Looking at the greater good, you may have an opportunity to really have an impact on other families,” she said.
For more information on Kaiser Permanente’s Autism Family Biobank, visit www.AutismFamilyBiobank.Kaiser.org.