In late November, a scientific publisher abruptly removed the abstract of a study from its webpage. The as-yet-unpublished research, which would have appeared in the journal Frontiers in Public Health, concluded that unvaccinated children are less likely to suffer from autism (among other ailments). The abstract was taken down after a severe Twitter backlash.
Motherboard has determined that the research in question was funded mostly by actor Jenny McCarthy’s autism awareness nonprofit, Generation Rescue. McCarthy has famously spread the dangerously inaccurate, and scientifically unsound, view that vaccines can cause autism in otherwise healthy children. (She has somewhat softened this view in recent years.)
Generation Rescue describes its goal as aiding in “recovery” of kids with autism spectrum disorders, although it is widely seen as a platform for “anti-vaxxers”—people opposed to vaccinations. Although Generation Rescue board member and co-founder J.B. Handley rejects the anti-vaxxer label, its website still includes resources on how to avoid vaccinations, for example. And the group is open to funding more research.
Funding from a group with a vested interest might warrant an added degree of skepticism
No matter how troubling on its surface, ethicists say that having a nonprofit like Generation Rescue fund of this type of study isn’t a red flag in and of itself: plenty of private companies and nonprofits pay for science. With President-elect Donald Trump threatening to cut back on funding, researchers will likely have to rely even more on private money.
Still, National Institutes of Health bioethicist David Resnik told Motherboard that funding from a particular group with a vested interest might warrant an added degree of skepticism. “You might re-examine the data more closely than you would otherwise because you think that, maybe, there is some potential bias that is affected by the research.”
The study, which Frontiers has put back under review, was based on an anonymous online questionnaire completed by mothers in four states (Florida, Louisiana, Mississippi and Oregon), and was forwarded to them via homeschooling organizations. The survey included 666 kids aged six to twelve, 39 per cent of them unvaccinated. The study found that, within this sample, vaccinated kids had higher rates of allergies and neurodevelopmental disorders than those who were not vaccinated.
There are some issues here: for starters, the study was based “on mothers’ reports,” as the abstract notes. On his blog Respectful Insolence, cancer surgeon David Gorski took issue with the tiny sample size and pointed out that homeschooling parents aren’t remotely the norm. This adds too many variables for this study to produce reliable results.
“Generation Rescue provided most of the funds for the study, but of course had no role in the study itself,” epidemiologist Anthony R. Mawson, study author and professor at Jackson State University’s School of Public Health Initiative, told Motherboard in an email. According to Mawson, the funding source was disclosed in the paper, although it did not appear in the study abstract that was later removed from the Frontiers site.
“I can assure you that we fully acknowledge the importance of vaccinations in public health,” Mawson said. When Motherboard emailed the official press contact of Frontiers for comment, the publisher declined to expand beyond an earlier statement.
Tobacco companies have been banned by many science publications from funding research
Ivan Oransky of Retraction Watch, which tracks scientific retractions, said that part of the problem is that government institutions have only limited budgets with which to fund research. “You’re left with pharma funding,” he said. “I wish that were different.”
He said the key to preventing private interests from potentially shaping research outcomes will be to ensure that the review system of journal publications is functioning properly. And of course, peer review and other safeguards are facing their own challenges lately.
“All of those checks and balances are supposed to mitigate or even overcome whatever conflicts of interest there are, in terms of funding,” said Oransky. “But it’s a slippery slope if you start to say that someone with an interest can’t fund a study, because you will very quickly end up with very few studies,” as the money to pay for them would dry up.
“Good science is good science, regardless who pays for it,” said Resnik. (Even so, certain groups, like tobacco companies, have been banned by many science publications from funding research due to the inherent conflict of interest they represent, he added.)
Generation Rescue says it hopes to pay for more research. “Any scientist is both welcome and encouraged to submit a proposal to us that explores environmental causation of autism or any method that might improve autism,” said Handley in a phone interview.
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