The Wakefield story and the need for clarity

Here’s another story about the ethical issues that arise in the reporting of research findings.

The Andrew Wakefield case has been the subject of many articles, blog entries and commentaries over the past few weeks. The story broke a few weeks ago in the UK Times, claiming that Wakefield misrepresented the relevant data for his February 1998 article in The Lancet, connecting autism spectrum disorder to the MMR vaccine.

Here is the original story from the Times: MMR doctor Andrew Wakefield fixed data on autism

The research was published in February 1998 in an article in The Lancet medical journal. It claimed that the families of eight out of 12 children attending a routine clinic at the hospital had blamed MMR for their autism, and said that problems came on within days of the jab. The team also claimed to have discovered a new inflammatory bowel disease underlying the children’s conditions.

However, our investigation, confirmed by evidence presented to the General Medical Council (GMC), reveals that: In most of the 12 cases, the children’s ailments as described in The Lancet were different from their hospital and GP records. Although the research paper claimed that problems came on within days of the jab, in only one case did medical records suggest this was true, and in many of the cases medical concerns had been raised before the children were vaccinated. Hospital pathologists, looking for inflammatory bowel disease, reported in the majority of cases that the gut was normal. This was then reviewed and the Lancet paper showed them as abnormal.

Wakefield’s response can be found here: Autism, bowel disease, and MMR vaccination: In his desperation, Deer gets it wrong once again.

Since the story broke, there have been numerous commentators on both sides of the fence, some wholeheartedly supporting Wakefield (and his co-authors) along with his data and others who are quick to vilify him. There isn’t much to say that hasn’t already been said or claimed.

So, what’s missing?

Clarity.

While most blogs and commentaries agree that this issue is one of incredible importance, not just for parents of children with autism but for all parents making decisions about immunizing their children or not, few have tried to sort out what is a very messy story. Even Andrew Wakefield’s response does little to debunk the claims of Brian Deer, the Times reporter who, according to other sources, has been on a “witch hunt” for Wakefield for many years. The response is lengthy, somewhat rambling and written in high-level medical terms. Researchers are typically encouraged to present documents such as consent forms, information sheets and debriefing material to participants in a way that is simple, easily understood and written in lay terms. Arguably, this also applies to dissemination of research data for public consumption and in the mass media. At this point, clarity and simplicity is required to help those following the story get accurate and accessible information.

Researchers owe it to the public to do their best to ensure that their findings and interpretations of their data are presented accurately and simply through the mass media. Despite the fact that the original article had a sample size of only 12 children (and Wakefield’s claims are modest at best about the correlation between autism and immunization), once the media got hold of the story, many viewed the small study as a landmark article. According to the media, rates of immunization dropped from ~ 92% to 80% in the UK and many journalists claim that this is a direct result of the Wakefield article. First of all, that is a difficult claim to make. Second of all, it is quite likely due to the way that journalists actually interpreted and reported the Wakefield data rather than the data as presented in the Lancet article.

The link between autism and immunization is, for many, a seemingly never-ending and confusing debate. Now, with this disturbing story, many parents, both those with children who have autism and those thinking about whether or not to immunize their children, are simply looking for some clarity on an issue that is already both widely misrepresented and grossly misunderstood. Without taking a side about the quality or veracity of Wakefield’s data or Deer’s reporting, they both owe it to the public to present some simply stated facts to help clarify what is now an even more muddled topic.

~ by Nancy Walton on February 15, 2009.

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