_SPECIAL REPORT AUTISM RESEARCH UPDATE

_Fine Line

Where is the ethical line between keeping the public informed about new developments in autism science and causing needless anxiety? Researchers are working on guidelines.

_Michael Yudell

Yudell is an associate professor in the Department of Community Health and Prevention in the School of Public Health. He is the director of the school’s program in Public Health Ethics and History.

_John Rossi

Rossi is an assistant professor in the Department of Community Health and Prevention in the School of Public Health. He is the associate director of the school’s program in Public Health Ethics and History.

Recently, a study found an association between the use of antidepressants during pregnancy and autism spectrum disorder (ASD). The researchers cautiously worded their findings, explaining that the underlying depression — not just the medication — could be a factor as well. But headlines declared, “Study Links Autism with Antidepressant Use During Pregnancy.”

It would be easy to see how a pregnant woman might want to stop using antidepressants to protect her unborn baby. But is that in her — and the fetus’ — best interest? To further complicate matters, a much larger study released a few months later did not replicate the finding.

Those are the type of risk communication scenarios — and unintended poor outcomes — that Drexel University researchers Michael Yudell and John A. Rossi plan to explore with a one-year, $68,000 Autism Speaks grant recently awarded. Ultimately, they intend to develop a set of ethical principles to guide scientists looking at environmental risks for autism — the first of its kind for the field.

“It’s an area in need of not only good science to unravel what autism is and is not, but also that more sensitively communicates findings to a community hungry for answers, and rightfully so,” says Yudell, who is a fellow at the A.J. Drexel Autism Institute.

“People are constantly engaging in a risk-benefit calculation,” adds Rossi, who is trained in bioethics and veterinary medicine. “You have certain information that’s scientifically very interesting, helps the scientific community understand autism, but that information may not be personally useful to someone.”

Rossi, who also is an Autism Institute fellow, allowed that some bioethicists insist that the public has a right to know all information, no matter how trivial. Others disagree on whether that is in the public’s best interest.

“You get into a bioethical tension, protecting people from harm and letting them make autonomous decisions,” he says.

The research study plans to target three groups: scientists, parents with and without children diagnosed with ASD, and adults with autism. Following a survey, a subset of scientists will be interviewed one on one. Focus groups will be conducted with parents and people with autism.

“We want to figure out a way for scientists to communicate in a language commensurate with the power of their findings,” Yudell says, “and do so in a way that’s responsible, that doesn’t send everybody running for the exits.”

Few researchers have looked at autism risk communication, but it’s an area arguably more critical than ever because of the significant rise in autism diagnoses. In 2000, the prevalence was one in 150; currently, it is one in 88, based on the Centers for Disease Control’s most recent data.

Research into environmental causes has exploded. “We have to ask, ‘What are we going to do with all this information?’” Rossi says. “It’s important to stop and ask, ‘Are there any ethical concerns that might arise with risk communication?’”

Autism’s early history has only heightened interest around ethical concerns. Early on, so-called “refrigerator mothers” who were considered emotionally distant were blamed. Treatment often involved removing autistic children from their homes so they could “thaw.”

Today, scientists are looking to genetic and environmental factors — but those findings often still significantly impact the public.

“I think scientists have a responsibility to do their best to communicate findings of their work in an ethical way, a way that’s both fair to the field and fair to those whom the work impacts,” Yudell says.