Put me down as one of those who was puzzled when Dean Mark Schlissel said on "All Things Considered," of the three genes to be tested in "bring your genes to Cal":
The Berkeley Daily Planet: [W]e purposefully chose three genes that are not disease associated...
People who are lactose-intolerant are more likely to develop hip fractures late in life--especially if they do not regularly take their calcium supplements. People with a low ability to metabolize alcohol are unlikely to become alcoholics--but if they do, they (at least as I read the literature) may be at greater risk of developing cirrhosis of the liver.
Pregnant women who metabolize folic acid poorly are more likely to have babies with neural tube defects like spina bifida. People with poor folic acid metabolism may be at greater risk of heart attack, stroke, and cancer. [UPDATE: This was wrong. See correction]
Now lactose-intolerance, slow alcohol metabolism, poor folic acid metabolism are not associated with any diseases that Berkeley freshmen have now: they are all healthy as horses--an amazingly fit and clean-living group. In that Dean Schlissel is correct: a freshman who hits "bingo" and is lactose intolerant, cannot metabolize alcohol easily, and metabolizes folic acid poorly does not have any diseases. Today. But these genetic markers are associated with a greater likelihood to develop diseases later on. And that has implications.
The first and most important implication is that, from a public health perspective, we would very much want freshmen to bring their genes to Cal and find out what the tests say. Those who are or will become lactose intolerant should get in the habit of taking their calcium supplements, and taking them regularly, now. Those with low alcohol metabolism... well, there are some fraternities that I think they should definitely not join, because the long-term health dangers of high alcohol consumption may be grave. Those with poor folic acid metabolism should get in the habit of taking folic acid supplements, and get in the habit now--especially women who are thinking of becoming pregnant. Figuring out what your genetic endowment is, determining what risks and obstacles it puts in the way of your leading a long and happy life, and taking action to mitigate those risks and avoid those obstacles is a very smart thing to do.
But there is a second implication--a consequence of our highly messed-up health and insurance system.
If you ask a normal American whether those unlucky enough to get deathly ill should have to pay the full cost of their extraordinary medical treatment, he or she will say no--that that is what health insurance is for. Most of us will be lucky. Some of us will be unlucky. We should all buy insurance. That way, being unlucky in your health will not leave you broke and impoverished as well as unhealthy. That is fair.
But suppose that the "luck" is something that is inextricably a part of you — suppose that the luck is, literally, in your genes and thus part of what makes you you? Are you still unlucky if you have a hip fracture at 70 because you have been lactose-intolerant all your life because that was in the genes that your parents gave you? Or should the insurance company be allowed to say that that is not bad luck, that is who you are--and charge you a higher price for your life and Medigap insurance than it charges others?
I would say no: people who are unlucky in their genes are unlucky just as people who are unlucky in having a tree branch fall and break their leg are unlucky. In both cases we want the community to cover the cost of their treatment: it's bad enough that they are in bad health, we don't need to make them poor also. There are others who would say yes: that once you know that you have a good chance of developing some condition or disease it is no longer insurance, and that others who don't run the same chance as you shouldn't pay for treating you for something that they never had any chance of getting.
In the United States of today, the logic of the life insurance industry and of risk underwriting is pushing us toward the second answer. If some life insurance companies use genetic information--like that being tested for in "bring your genes to Cal" — to deny policies and raise rates while others do not, those life insurance companies that do not will find themselves losing money and markets and disappear. And it is conceivable in some possible futures that some insurance adjuster somewhere will deny payment because "your mother knew that she was at higher risk for a hip fracture because of her lactose intolerance, and did not disclose that to us."
In the United States of today, however, the logic of the social insurance state — most recently the PPACA Obama health care reform bill--is to deny private insurance companies and the government of the option to treat some people differently than others, to charge some more or deny some policy coverage completely because of what is in their genes. The PPACA requires community rating: that insurers ignore what they know about how much your medical care is likely to cost because you are lactose intolerant or predisposed to hypertension or whatever.
Thus I would like to see "bring your genes to Cal" proceed along two tracks:
First, what our genetic endowment tell us about how we should, as a group and also as individuals each with our own unique genetic makeup, change our behavior to lead longer, richer, and healthier lives.
Second, what the increase in knowledge about our individual selves and our individual risks does to undermine the more general principles of social insurance--that one of the things societies do is to spread risks around, so that the unhealthy are covered by insurance and treated by doctors and so are just unhealthy, and that their ill-luck is not amplified by a system that requires that they impoverish themselves in order to get treatment or even that denies them treatment so that they die instead.
The best place to be, it seems to me, is with single-payer publicly-funded national health insurance and as much individual fine-grained information about genetic makeup and risk as we can get.
But the United States is not there. And it does not look like the United States is going there anytime soon. And as long as we are not there — as long as your life insurance company would dearly like to know how likely it is that you will fracture a hip at 70 because it might cost them money — there was going to be a tension to manage between social insurance risk-spreading on the one hand and knowledge of our genes and their effect on our destinies on the other.
So we had better get started on managing this tension.