Perhaps that title is a little over the top since I don’t mean all doctors but it captures the sense I got from a recent radio discussion on KQED (NPR station) about at home genetic testing. On that show two prominent doctors were warning about the dangers and harms of these unregulated kits for at home genetic testing and complaining that people were getting this information without the counseling of a medical professional or a clear understanding of what the information meant. Hopefully their demands for regulation went beyond what most doctors would support but it was my sense that they represented a view that a sizable fraction of the medical community would support.

Now there are real concerns that ought to be addressed by regulation. Any at home genetic test should be regulated to guard against fraudulent misinformation or scientifically unsupported medical advice. They should also be regulated to ensure that they give accurate results and report the chance of type I and type II error to the test taker. However, it seems self-evident to me that as citizens in a free country we ought to have the right to any information about our own genetic profile we wish to receive. So long as the test manufacturer does nothing besides inform the customer of what genetic variants they possess and what the current research suggests about these variants they should have the right to supply us that test.

The doctors on the program raised the valid concerns that people might very well not know how to react to the type of genetic information they receive. For instance they implied that individuals might be better off not being told they have a gene that boosts their change of cancer by 1.2 times since people have trouble understanding what a small effect this is and may then demand extra tests that increase their risk and burden the medical system. Well perhaps these individuals would be better off not knowing this information but is that valid grounds to legally deny it to them? I think not. The doctors kept insisting that we needed studies to determine what information improved public health and what didn’t which is important but in terms of regulation misses the broader point that public policy has broader goals than maximizing public health.

No doubt public health would increase if restaurants and supermarkets were only allowed to sell us food that our doctors approved but obviously we should have the right to buy the food of our choice. The fact that people generally have a poor understanding of the effect of food choice on their health is irrelevant. In the long term we tend to find that the harms to innovation, frustration at being told what to do, and the slippery slope towards further regulation that result from the restriction of freedom are worse than the more obvious immediate harms. In other words if our society believes freedom is so important that we protect racist and bigoted speech then surely we ought not to restrict people’s access to their own genetic information just because they might not understand it.

If I want to find out if I have gene BLAH I should have the legal right to do so and so long as the company offering me the test for this gene doesn’t misrepresent our certainty about the role of BLAH they should have the right to offer me such a test. Of course doctors should be free to discourage us from using such tests just as they are free to discourage us from using tobacco or eating junk food but the law shouldn’t require us to do what our doctor asks. So long as doctors don’t drag their feet on incorporating genetic information into their practices as quickly as the science allows I expect the percentage of people who insist on ignoring their doctor’s advice will remain quite low. Ultimately though, the right to obtain information about our own genetic makeup is so central to our freedom and liberty that nothing short of a plague level public health catastrophe would justify denying this freedom.

Hopefully I merely misinterpreted the doctors on this show and they weren’t proposing that we bar companies from offering genetic information unless it offers a net public health benefit. However, doctors are people too and it’s very easy for people to get caught up in their personal mission (especially when it’s something noble like serving the public health) and forget that this isn’t the only, or even primary, aim of public policy. Of course if you are a doctor and you see people coming into your office with information from genetic tests that you don’t know how to properly interpret and demanding what are likely harmful procedures your likely to want to clamp down on these tests. It’s a natural human reaction to want to control things that interfere with our mission but that just isn’t how we should handle them in a free society.