Jan 10 2010

Newsweek Article on Rom Houben Case

I think I am getting a feel for the new science news cycle (post web 2.0). First a science news story hits the mainstream media. This can either be a press release that was uncritically passed along as news, or perhaps a local news story that was uncritically picked up by the national media (uncritically being the operative word). Then the science blogging community gets involved. We dissect the story and provide analysis and insight. There is, of course, a lot of noise in this phase of the news cycle, as there are many science blogs of varying quality. But in my experience those blogs that float near the top of aggregators and rankings tend to be high quality.

The second wave of science blog analysis is often just damage control – but this is where the real story is told, often by experts in the field. If the story surrounds a published peer-reviewed article, then we get first hand scientific analysis of the article (noted by the “peer-reviewed blogging” logo). If it is a personal story or claim, this is trickier, as the bloggers often rely upon traditional journalists to do the actual investigation and they can only comment on that investigation. Although sometimes we can add a little investigation of our own (whatever can be done via e-mail or the internet). At times the role of the science blogger is not so much correction as context – putting a science news item into the proper context of the scientific literature.

There also appears to be a third wave – sometimes – back in the mainstream media. It occasionally happens that big media journalists will pick up on the real story being told by science bloggers (and increasingly journalists troll popular blogs for this reason) and will write a follow up story echoing (not necessarily copying – they may be duplicating) the corrections made by the second wave of bloggers to the first wave of reporting. Sometimes they even go a step further, adding some more journalistic investigation. This seems to me to be an excellent niche for the big media outlets to fill.

On to the Houben Case

All of this brings me to the Rom Houben case. If you remember, I blogged about the man who was in a coma for 23 years, except he wasn’t in the kind of coma (persistent vegetative state) his doctors thought. He was in a less severe minimally conscious state, as determined by a relatively new method of scoring neurological function in the comatose. It was reported he was in a locked in state (conscious but paralyzed), although it was never clear from the public reports if that was in-fact the case .

But this neurological story was swallowed by the controversy of facilitated communication.

The family, after learning that Mr. Houben was not as comatose as previously believed, contacted a facilitated communicator – Linda Wouters. She began “communicating” with Houben by FC – using his finger to type on a computer screen. From the public video of her doing so it was obvious that Houben was not doing the communication – in one video he was not even looking at the computer screen and may not have been awake. In any case, even awake and “attentive”, it is highly implausible that he could direct Wouters through subtle contractions of his hand muscles (too subtle for the doctors to detect) to fly over the computer screen, typing furiously and accurately.

After the story of Houben was presented uncritically (there’s that word again) in the press, the science blogging community erupted. We focused on two questions – the one about Mr. Houben’s state of awareness, which is an interesting neurological issue itself, and the one about the legitimacy of FC, which became the bigger issue.

Now we have come to the third wave of in depth analysis, months later, from a mainstream outlet – Newsweek. Here we learn that Mr. Houben’s neurologist, Steven Laureys, was asked to provide a case to put a human face on his research (which are the exact words he used to me in an e-mail about this case). His research, which is legitimate and interesting, involves using a standardized clinical assessment to more accurately distinguish PVS from minimally conscious state. But Laureys made the mistake of choosing a case tainted by FC.

The problem, Newsweek reports, is that Laureys was naive about the true nature of FC and thought it was legitimate. He then “confirmed” FC in this case with a simple test – but apparently without the rigorous controls that such a controversial method deserves. He therefore convinced himself that FC, and specifically Wouters, was legitimate.

Newsweek now reports:

Unfortunately, the furor over this odd “therapy” has further confused what the public understands about coma recovery. In fact, facilitated communication is so rare that it’s a nonissue for most brain-injury patients. Neither Laureys nor Giacino has ever seen another brain-injured patient use it. Nonetheless, Laureys is planning a thorough investigation and asks the public and the scientific community “to be patient” until he can get “facilitated communication through [a] peer-reviewed journal.”

So now Laureys thinks he is going to overturn the last 20 years of research that clearly shows FC to be a hoax (if an unintentional one in most cases – a manifestation of the ideomotor effect). What is going on here? From this it would seem that Laureys was initially just uninformed about FC, and was caught up in its controversy because of the Houben case. His initial response to be challenged on the FC aspects of this case was to become defensive, and try to shield himself with the moral high ground – saying that he does not want to question Houben’s consciousness after he was already misdiagnosed. This was an unacceptable response – because if Houben were conscious FC would simply have, once again, stolen his ability to communicate. The moral high ground would be in taking a very skeptical view of FC.

But now, rather than just admit he didn’t know much about FC and perhaps was initially mistaken, Laureys appears to have dug in – in which case he is definitely going to dig himself in deeper. What, exactly, does he mean that he intends to “get facilitated communication through a peer-reviewed journal?”

The Newsweek article concludes:

As Laureys heads back into his lab, leaving behind a mess he wants to clear up one day with published science, he admits to some naiveté and says he feels a little “paranoid.” “Don’t I regret, or should I have foreseen, that this would have happened? Well, I didn’t,” Laureys says with a sigh. “In retrospect, of course, it’s always easy.”

It would be easier to clear up this mess by admitting error. Or, Dr. Laureys can dig in and threaten his reputation by defending pseudoscience. Sure – I will wait for the peer-reviewed research before making any final conclusions, but any research Laureys hopes to publish must be viewed in the context of the very low plausibility of FC and the previous research showing it to be nothing more than the ideomotor effect and wishful thinking. What Dr. Laureys is much more likely to prove is the ability of scientific researchers to get snookered by pseudoscience. We have been here before – just look into Project Alpha if you want a clear example. Laureys would not be the first scientist to ruin his reputation by being naive about pseudoscience.

But further, I have to call BS on Laureys for saying that he could not have foreseen that this would happen. I know this to be untrue because I told him directly in an e-mail (to which he responded) that this is exactly what would happen.


So what are the lessons from this case? One is the way in which the science news cycle is evolving to incorporate science blogging. This is a good thing, and it will be interesting to watch this evolve (admitted from the perspective of a science blogger).

But second, and more importantly, is that mainstream scientists would do well to have a working knowledge of pseudoscience and specifically the popular pseudosciences in their area of expertise. If they get blind-sided by a pseudoscience, then they should make the effort to educate themselves quickly.

Which brings me to the next lesson – mainstream scientists should recognize the special expertise and knowledge base of scientific skeptics. Skeptics are likely to have a detailed knowledge of a particular pseudoscience, as well as experience dealing with the press about such issues, how not to get punked by fraud or self-deception, and how to deal with attacks from pseudoscientists or their apologists. Laureys could have avoided this entire affair, or rapidly performed damage control, if he had consulted a skeptic – or just accepted the freely offered advice from one (ahem), who also happens to be a neurological colleague. (I acknowledge this last bit is very self-serving, but take it for what it’s worth.)

And further – scientists need to learn how to better deal with the media, including the rapidly evolving new media. Some have, others have not and can easily suffer from a bad media encounter. Specifically, in this case, Laureys tried to deny where the media was taking this case – to FC. He responded by saying that this case was about his research, not FC (fail). He then desperately tried to say that this case should not be discussed in the media, but worked out in the peer-reviewed literature (too late – you already made this a media case, and can’t have it both ways).

Laureys seems to have made all of the above mistakes. His reputation is now on the line. The more he digs in on this FC issue the more he is likely to bury himself. But maybe it’s not too late to take some friendly advice from scientific skeptics.

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