California Considers DNA Privacy Law

I once read a study done in Sweden to find out how accurate a prostate cancer test was.

30 years ago, they had done a study of cholesterol, and saved the blood samples. So they could go back, thaw out the blood samples, and see what the PSA level was. Then using Sweden's wonderful medical records, they could find out how many of them had died of prostate cancer at each level of PSA.

This was very useful. If you go to a doctor, and he tells you you have an elevated PSA, you want to know whether it's something you can safely ignore or whether you have to get surgery (which leaves you impotent about half the time and with urinary incontinence about half the time).

If they had laws like the ones proposed here, they just couldn't have done it. It's one thing to have a collection of 100,000 blood samples that you can feed into an automated testing machine. Its another thing entirely (and much more expensive) to have to track down 100,000 subjects from a 30-year-old research project, many of whom have died (including the very people whose blood is most important to test).

Or suppose you turn 60 years old and go to the doctor for a routine exam. Your blood test results come back and he tells you you have chronic lymphocytic leukema. Some people die in 6 years. Other people die in 30 years. He can't tell how long you've got.

Well, now he can tell how long you've got. There's a DNA test. People with one mutation live 6 years, and people with another mutation live 30 years.

Obviously they didn't get signed permission from people with leukemia to test their DNA and follow them for 30 years. They went back and tested stored blood samples of people who died after 6 years and people who died after 30 years.

I don't want to oversell genetic studies. They're at a very early stage. But there are a lot of successful results. Doctors can tell who needs dangerous, debilitating medication in order to have a chance to live a little longer, and who can just skip the medication. They can get clues to new drugs. There are great promising results too complicated to explain here. But if they had to go through these specific informed consent forms described in the Nature article, they simply couldn't do it. It's like prohibiting stem cell research.

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