Saturday, May 3, 2014

Diversity in Science

One lesson of the past week is that a controversial post gets about triple the views as a regular old boring post. If I were doing this for money, I'd certainly feel pressure to create controversy where none exists, which of course explains a lot of what you see on the Internet.

In that spirit, I've attached a clickbaity title to this post that has nothing to do with diversity as usually understood.

I recently heard of the untimely death of a guy named Seth Roberts who was a leading light of the "self-experimentation" movement. In short, self-experimentation is doing medical experiments on yourself in order to solve problems that you yourself have, such as insomnia or overweight. We all do it informally - maybe your pillowcase goes in the laundry for a couple nights and you notice that you sleep better without a pillow  - but self-experimenters consciously collect and analyze quantitative data.

The self-experimentation movement stems in large part from criticism of established medical science as corrupt and harmful. A couple of posts ago I touched on one way this can happen. Unfortunately, many questions can only be answered by large-scale, expensive studies that, like any big operation, are vulnerable to exploitation by the selfish and short-sighted.

But even if big-time science were ethically pure, there would still be a reason to like self-experimentation. It has to do with the observed fact that people can follow widely varying lifestyles but have the same health level; in other words, wide diversity in people's responses to what they eat and which medicines they take. A good doctor will grasp this and it's why medical training is mostly just concentrated experience with patients rather than textbook learning. When there are five different cholesterol medicines, a good doctor will run you through all five to figure out which one works best for you.

Part of the diversity in human biology is only apparent diversity because we are still ignorant of the causes of many diseases. Lung cancer patients are more likely to be smokers than people without lung cancer, but there are nonsmokers who get lung cancer. We know about some but not all other causes of lung cancer. For instance, maybe new car smell causes cancer, but we just haven't made the connection yet, so people who got cancer from new car smell just show up as "statistical anomalies".

But I think part of the diversity is actual diversity in the biochemical processes of human life. There is obviously large diversity in human appearance and behavior. There's also anatomical diversity - things like horseshoe kidneys, extra toes or supernumerary nipples. So there's most likely wide diversity in less visible things like hormone production, enzyme balances, gut bacteria and a bunch of stuff we can't even guess about.

Why can't big-time science deal with the diversity? If it takes a billion dollars and ten years to cure a disease, the only diseases that will be cured are those that work pretty much the same in everyone. It doesn't make sense to spend a billion dollars to cure a disease that only a few people get. That money would do more good buying antibiotics or vitamins for people who can't afford them.

I used to have a lot of stomach problems. I'd get a bad upset stomach three or four times a week and it was stopping me from doing things I wanted to do. I went to several docs, but despite various probes stuck in various places nobody could figure it out. They tended to think it was "nervous stomach" and did things like putting me on a low dose of Xanax, which I was never comfortable with.

After years of paying attention to this, it dawned on me that my stomach empties much slower than normal. You know that "sloshy" sensation you get after you drink a big glass of water? I sometimes get that sensation four hours after I've eaten anything. The slow emptying causes problems because mealtimes are spaced according to the average person's digestion and by following normal eating patterns, sometimes I'd just get too much food in there.

So I went to yet another doctor but this time made a point of complaining about the lasting sensation of fullness. He put me through one of those studies where you eat oatmeal with radioactive particles in it and then they use a fluoroscope to watch the particles move through your gut. Hours passed and the technician wanted to go to lunch, but the particles were still sitting in my stomach. The doc wanted me to take Reglan but that has some side effects, so I just changed the timing and amounts of food I eat, and have had few stomach problems since.

I guess the lesson is that we all have to be our own doctors first, and find a good real doctor who doesn't assume that you'll always respond to treatments like the average patient in a study.  Devices you can wear to collect large amounts of real-time data on what's going on inside you, along with automated crunching of the data, could help doctors tailor treatments to your particular system. We can only hope that such devices are allowed to be invented and sold.  


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