Wednesday, June 29, 2005

let's agree to disagree, because I don't believe you

The intersection between open information access and public understanding is an interesting one in healthcare. The NYT published two articles recently that encapsulate this well. The more recent of the two articles covers the current war brewing between parents and medical authorities over vaccines.

The article caught my eye because I have two friends who are on opposing sides of the divide on this particle issue. One of my friends is a new parent, who has firmly declared his intention to prevent his son from being immunized for as long as he possibly can. He has been reading up and what he has been reading has convinced him that vaccines pose a threat to his infant son, including putting him at increased risk of developing autism. In fact, the last time I mentioned the wonder of the polio vaccine to him, it set him off on a tirade about SV40. SV40 was a viral contaminant found in early versions of the polio vaccine. While it has been found in certain human types of cancers, there is not conclusive evidence that SV40 has a causal relationship to cancer. The government has long since regulated that any vaccines manufactured after 1961 must be free of SV40. However, my friend is still convinced that companies and the government cannot be trusted, and that some vaccines still could have SV40 contamination.

But getting back to autism, the claim against vaccines here has to do with mercury contamination. It is true that there are microscopic levels of mercury present in vaccines. The preservative thimerosal used to be employed routinely in vaccine preparations, and the preservative does contain a derivative of mercury. Still-
"By 2001, no vaccine routinely administered to children in the United States had more than half of a microgram of mercury - about what is found in an infant's daily supply of breast milk."
If anything though, this requirement seemed to heighten parents' concern that thimerosal may have been connected to their childrens' autism. Leading the charge is Dr. Mark Geier, something of a renegade researcher, to whom the NYT attribute the following:
"Dr. Geier said in an interview that the link between thimerosal and autism was clear." & "Public health officials, he said, are 'just trying to cover it up.'"
So now it might look like there's a whistleblower at work here, someone who has crossed the picket line and is advocating for truth. Except that those of us with a science background cannot help but be swayed by this criticism:
"Scientists say that the Geiers' studies are tainted by faulty methodology.

'The problem with the Geiers' research is that they start with the answers and work backwards,' said Dr. Steven Black, director of the Kaiser Permanente Vaccine Study Center in Oakland, Calif. 'They are doing voodoo science.'"
Anyone who has tried to do experiments this way knows the flaws here all too well. It is far too easy to bias your results if you have already decided what your conclusion has to be.

My friend SP is the other friend, the non-parent that is also a physician who happens to work in infectious diseases. To her, there is nothing more dangerous than my parent-friend's thinking. She tells me that parents are quite commonly now citing herd immunity as a rationale for foregoing immunizations. She also says that the internet is the enemy of many a physician for exactly these types of occurrences.

As usual, I sit on the fence, taking it all in. My innate scientific bearings tempt me to side with SP. At the same time, I am not a parent. If I were a parent, I imagine, as a scientist, I would be reading voraciously about maintaining the wellbeing of a child. Furthermore, if there was even the slightest doubt that studies were inconclusive, or there was the slightest possibility of risk, I can't be certain that I would bravely suck it up and follow my physician's lead. I have to assume that reading up, educating oneself on medicine and its dangers is a positive thing. But all of this patient access to information must lead to physician frustration as evidenced by the second NYT article, rather aptly titled Doctors do know some things patients don't know.

When my grandfather had some health complications recently, I remember feeling this urge to fly to where he was. This urge was not grounded in a need to make sure he was going to be okay. Rather, I wanted to sit down with his physician and interrogate him about my grandfather's condition. I wanted every fact, and what I was getting from my parents, uncles, and aunts was not cutting the mustard. I wanted to understand as much as the physician did about what had happened, what the treatment paradigm was, what the long-term outcomes were. In the absence of that Spanish inquisition, I started reading up on the diagnosis my grandfather received. This only served to further alarm and discomfort me. What I was reading did not match with how he was being treated. I started to get suspicious. I was making everyone around me nervous, until I (albeit unwillingly) let go of all my doubts. At some point, I had to give in that my grandfather's physician probably had experience, understanding and training that trumped all my misgivings. And in this particular case, it was true and my grandfather was fine. But it doesn't always turn out that way.

It would be nice if there were some way to titrate, to determine whether a physician is talking out the wrong orifice, or whether a parent/family member/patient is getting excessively paranoid. As luck would have it, I happen to know a little bit about science, and therefore, I have slightly better instincts about whether an uh-oh feeling is warranted or not. I know what I don't know at the very least. But I still can't blame people who question a physician's diagnosis, or patient advocacy groups who browbeat physician groups about new therapies, etc. It feels chaotic, but everyone is just trying to respond to the deluge of information out there, a difficult task given that there is not always a good way to rank the information based on scientific merit.

Well... I just gave myself a headache thinking about all of this. But I guess it was better than thinking about my life, and my crazy newly hatched plan. Don't worry, none of it involves Scientology.

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