Wakefield's Wake, Part 5: Treat advocacy groups with a healthy dose of skepticism
One of the main groups involved in Andrew Wakefield's vaccines-cause-autism scare was called JABS.
The letters stood for Justice Awareness and Basic Support. It billed itself as the "support group for vaccine-damaged children." A jab, in British parlance, is the same as a shot in the US. And the group was focused on jabs from vaccines as the cause of autism and other disorders.
As investigative journalist Brian Deer uncovered, the group funneled parents to Wakefield as part of an effort to launch lawsuits against vaccine manufacturers and to create a scientifically viable link between the measles, mumps and rubella vaccine (MMR) and autism through carefully orchestrated studies.
JABS officials and affiliates were widely quoted in the years between Wakefield's initial publication in 1998 and his ultimate undoing in 2010 with the article's retraction.
Similar organizations are quoted all the time and rarely are their motives questioned. Left Brain Right Brain, a thoughtful blog about autism, wrote recently about one group in particular, The Age of Autism, having a single-mindedness that smacks of JABS.
So what's a health writer who wants some good contextual quotes to do?
First, stop dialing groups for a quote just because their name sounds on target. Placing "American" in front of something doesn't make it a truly national or nationally representative group. Including "autism" in a name doesn't mean that the group is involved in serious work to find cures and treatments for autism disorders.
Second, treat these advocates the way you would any other source. I mentioned this before with parents, and it is worth repeating. Don't let advocates make bold claims without proof. Robert Goldberg, author of Tabloid Medicine, posted a great video about what reporters should have said when interviewing Jenny McCarthy, who, as everyone knows, has her own advocacy organization: Generation Rescue.
Third, find out who is paying the bills. If they are registered as a nonprofit, they have to file a Form 990 with the IRS, and you can ask them for a copy, ask the IRS for a copy or look it up on Guidestar. If they are not registered as a nonprofit, that's odd and should make you ask even more questions.The American Journal of Public Health wrote recently that groups like this too often fail to disclose their ties to pharmaceutical companies. (Here's the link, but a subscription is required.) This doesn't mean that they are only interested in making companies money, but if an advocacy organization is essentially an arm of a pharmaceutical company or a so-called "astroturf" organization, that information should be given to parents who are making life-and-death decisions for their children.
I went into even more detail about the questions reporters need to ask about advocacy groups in an earlier post. The most important thing to keep in mind is that any group can claim to have a public-minded mission and a faithful following. Don't let groups selling conspiracy theories, veiled pharmaceutical marketing or other scientific snake oil legitimize themselves by being quoted in your outlets.
Next: Don't call it a witch hunt. Scientists who perpetrated vaccine scare should be called out
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