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02 January, 2012

23andMe and the prospect of eugenics

Though not quite as elaborate as the eugenics of Gattaca, 23andMe is a service that, for $200, will tell you quite a bit about your genetic traits, disease risks, and family heritage. I decided it would be a fun thing to do. Actually, I decided it would be a fun thing to purchase as a gift for a friend who is a biologist. And the friend, in turn (and independently), decided it would be a good gift for me.

There's a lot of information in the results they provide. Some of it is not at all surprising, such as validating your risks of diseases that you already know are in your family (though, it's a reassuring "positive control" to see this appear in the data). There's also a lot of muddier information, where they tell you that you've got potentially elevated risk for something, based on some of the markers in your genome, but potentially decreased risk based on other markers. Of course, that's completely to be expected, but leaves you with not a whole lot of certainty as to whether you actually are at risk.

I suppose there are only a small number of cases where one learns something extremely significant about one's genetic risks. 

One of the neat things about 23andMe is that they have a large number of surveys where they ask you about your own traits, history, and drug sensitivities. The answers to these survey questions, combined with the genetic data that they have collected from a large number of participants, enables them to occasionally identify new associations between markers and traits. So this is a two-way service. They tell us something. But we also tell them something that is used to fuel further scientific discovery.

So what did I learn?

I learned that I have almost double the average risk for prostate cancer, which was interesting to me, because there are no known cases of it in my family (to my knowledge, though my family is so poor at communicating, that perhaps I wouldn't have heard about it anyway).

I learned that I have dramatically lower risk for any type of colon disorders such as cancer, irritable bowel, Crohn's Disease, etc. That's good to know.

I learned that I have much greater than average risk of heart disease, which is consistent with the fact that heart attacks, angina, and arteriosclerosis are widespread on my mother's side of the family.

I learned that I have significantly lower-than-average risk for developing Alzheimer's Disease.

And I also learned that, on my maternal grandmother's side of the family, my heritage at some point traces back to one of the most common European ancestries; not a purely Jewish heritage like I would automatically have suspected.

There are a bunch of other things, but these were the ones that stood out as particularly interesting.

Moving back to the Gattaca topic... how will this data be used in the future? Will insurance companies be allowed to genetically screen people? Should they be allowed to do so? Why is it okay for life insurance companies to charge higher premiums for people who smoke, but it's not okay for health insurance companies to assign higher premiums to patients who carry higher risk for developing diseases?

The quick answer is that lifestyle choices are something we can control, but genetics is not. And we have actually seen health insurance moving in the direction of more privacy, rather than less, in my lifetime. I recall being denied health insurance because of something that was seen in a physical examination when I was in my twenties. It turned out to be a mistake. But the fact is, it happened. Today, we don't see that happening. And even preexisting conditions seem to be covered. Should they be?

Should a health insurance company need to be forced to take on a high-risk patient, and lose massive amounts of money? Or, at the least, should they be allowed to say "Your genetics indicate you have double the risk of cardiovascular disease of general public. Thus, if you want us to insure you, we're going to charge you such-and-such a premium. And if you smoke, the premium will go up by this much. And if you do not maintain your weight below such-and-such a level, your premium will go up by this much."

It sounds brutal, but it is also completely logical for health insurance companies to want to do this. Of course, the resultant litigation would be a nightmare, as would the attempts to falsify data that the health insurance companies can maintain.

The Gattaca scenario of carefully selecting the best possible genetic material, so as to avoid these expensive outcomes seems like a more viable solution than the approach of prorating healthcare.

But can you imagine the battles there would be if the government tried to mandate in vitro fertilization for the purpose of eugenics? There would be huge opposition from the religious right, and from the personal freedoms supporters of both the liberal and libertarian groups. Who would support such a thing? What ideology? It would be easy to envision it in the context of some horrible ethnic cleansing. But what does it mean to cleanse, not by ethnicity, but by genetic "fitness"? Is that any better or worse? And who decides? In a purely capitalistic sense, one could set the goals at eliminating those diseases and disorders that carry the largest price tag. 

It's a scary thought. I cannot really envision us going to it. But it is also (in my opinion) nearly equally odd that individuals who are born with zero, or virtually zero chance of normal lives are provided millions of dollars of medical support, while we don't have the healthcare resources available in this country, or in other parts of the world, to provide basic healthcare to everyone.

The argument is political, philosophical, ethical, and economical. Of all those "-ical" arguments, I suspect, in the long run, economical will be the trump card.

One final angle to consider is the impact that such data could have on relationships and marital choices. If you knew that your partner was a carrier for a trait or a disease, how would that impact your decision to start a family? The implications here are slightly more favorable, in that eugenics could offer couples the opportunity to screen to avoid genetic diseases. This already happens today. But a more widespread availability of such data, and the stigmas and propaganda that could evolve along with that availability, could lead to a new type of relationship conflict. Ultimately, it could give rise to new approaches to "mate selection." One could even envision dating sites where, instead of using a special formula to find your best matches based on preferences and personality, you would be given your best matches for genetic compatibility. The possibilities, again, are endless.

1 comment:

  1. It is important for people to be aware of the trust issues involved in testing at 23andMe. Here are some recent links that describe a recent development. There is even a customer petition circulating pleading with 23andMe to honor their original commitment.

    http://www.yourgeneticgenealogist.com/2011/12/23andme-changes-tos-for-expired-pgs.html

    http://blogs.discovermagazine.com/gnxp/2012/01/23andme-controversies-in-the-genetic-genealogy-community/

    http://blog.eogn.com/eastmans_online_genealogy/2012/01/23andme-generates-controversy-with-new-subscription-policy.html

    http://www.forbes.com/sites/kashmirhill/2011/12/07/privacy-policy-changes-should-be-crystal-clear-especially-when-your-genetic-info-is-involved/

    Be sure to be informed if you are interested in personal genomics. Read the FB page and comments and if possible, see what is going on in the internal customer forums.

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