Bridging the Divide Between Parents and Scientists
The March 2015 edition of National Geographic magazine arrives with the provocative title, "The War on Science," on a cover purporting to show a faked moon landing. Inside, in "The Age of Disbelief," readers learn that many Americans are skeptical of global warming, evolution, the moon landing, and vaccines. That puts them at odds with most scientists.
For some families affected by autism, the biggest source of concern from that list is probably vaccines.
Into this divide comes Dr. Ruth L. Fischbach, a bioethicist at Columbia University. She fears that a lack of trust and communication between parents and scientists could harm the medical and public health response to autism spectrum disorder – and cause parents to try untested treatments.
Her team of researchers surveyed both camps: 502 parents of children with autism in the Simons Simplex Collection, a research project affiliated with the Interactive Autism Network, along with 60 scientists associated with the Simons Foundation Autism Research Initiative. She sought their opinions on the causes of autism, research priorities, stigma and genetic testing.
She found several notable areas of agreement between parents and scientists. But first, let's look at where they disagree. That takes us back to vaccines.
The scientists overwhelmingly believe genes cause autism (95%) compared to just over half of the parents (55%). One in seven parents believes vaccines cause autism; none of the scientists do. More than a third of the parents would hesitate to vaccinate their children, compared to just 3 percent of the scientists. Not surprisingly, the two groups differ on how much more research should be done on vaccines as a possible cause of autism. Most parents want at least some more research on the topic, while most scientists don't.
Despite these differences, both groups picked treatment as the most important goal of autism research (40 percent of parents and 46 percent of scientists). They differed somewhat on research into causes, cures and prevention. A larger percentage of the scientist wanted research into causes, while more parents favored research on cures and prevention.
Scientists and parents also largely agree on genetic testing. Traditionally, scientists have been reluctant to share genetic findings. However, in this survey, scientists and parents alike strongly supported disclosing the results of genetic testing, including findings unrelated to autism, to people who wanted to know their own test results.
One area of "remarkable agreement" among scientists and parents concerned the stigma society places upon people with autism and, by extension, their families, Dr. Fischbach said. Almost all parents and scientists said they believe people with ASD faced social rejection, isolation or damage to their social identity.
Dr. Fischbach's team asked several questions only of the scientists. About 70 percent of the scientists say they're very comfortable discussing their work with parents, and believe it's very important for them to understand parents' concerns and experiences.
Her team found some barriers to scientist-parent communication, however. The scientists cited their time constraints, along with a lack of opportunities to talk to parents, as major problems. Some of the scientists cited a perceived lack of interest on the part of parents or scientists as a "small barrier" to communication.
Dr. Fischbach is hopeful that these barriers can be overcome and communication between these two groups may improve. "Scientists are an untapped resource for parents," she said. To learn more about her research, please view her online presentation at Webinar on the Views of Parents and Scientists about Autism.
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