Andrew Wakefield links of shame

This short article is the most recent update on the fallout from Wakefield’s actions. A longer version is also available. Finally, a broad explanation of the investigation is available on the journalist’s website.

Here are some things that we didn’t note in our earlier post: this article from a few days ago is NOT the first article on the issue. That was in 2004! That means that for over 4 years, people have been flogging the vaccine issue in the UK and the US, while it was KNOWN that the underlying data was bad. Now, we’re science-minded about these things. Bad data doesn’t automatically mean the conclusion is wrong, but that savings clause isn’t an excuse to keep relying on it.

Anecdotal evidence isn’t.

If data is found to be bad for any number of reasons, the universe of rational responses include stopping all further investigation (such as here, where the data look to be both nonrandom and manufactured) and more investigation (several studies have been done by well-meaning epidemiologists to uncover any MMR-autism links). Believing the conclusion without independent confirmation, and then acting on it, don’t fall within that universe.

I don’t blame parents for trying to help their children (and no one should). I believe that even parents doing things that most believe are not scientifically validated are trying to help their kids. But advisors, starting with doctors, have an obligation, as part of their professional responsibility, to educate parents about the state of research and the implicit trade-offs in treatment decisions.

With early intensive behavioral intervention being the most widely supported treatment in the research (and “research” means peer-reviewed published research; anything else real scientists understand is anecdotal because they’re not prideful or near-sighted), and given the “time is of the essence” nature of the treatment, anything that takes time away from that intervention creates a risk that a parent will have squandered those few hours or months that might have gotten a child to the tipping point. I know that I am nearly overwhelmed by guilt that we had any faith at all in the Early Intervention system in New Jersey and in a former school district, which resulted in a long time lag before we figured out what actual implementation of the required treatment was necessary to help Dylan. In other words, there are lots of people “doing ABA” that has as much to do with implementing ABA as bleeding people has to do with practicing medicine.

Unfortunately, parents are not born with the skills necessary to differentiate between quality treatment and a finger-drill version of asking questions that looks like ABA. We’re working on some ideas to help parents figure it out.