Item — HN Reader

>Now, you might think that 23andMe has a chance of solving this issue, by allowing people to take control of their own genetic profiling, but I think they're actually doing more harm than good.

23andMe told me that I'm a carrier for phenylketonuria. That's useful information to me, and strictly factual. The other slight-increased-risk-of-this slight-increased-risk-of-that isn't all that useful, but who cares? They give you the odds. I can't imagine what more you'd expect from them than to present current research conclusions as unbiasedly as they can.

I think you have a mistaken impression about what their product does.

1 comments

> 23andMe told me that I'm a carrier for phenylketonuria. That's useful information to me, and strictly factual.

Quick! What's your chance of passing this on to your child? If you said that it depends on the genotype of your spouse, you win! If your spouse doesn't have phenylketonuria, what's the probability? If you said 1/4, your right!

Now, let's say you've met someone and convince them to get a genetic test, and they turn out to also be a carrier, what do you do? Do you risk the 1/4 chance? One of the really interesting things about the human genome project was that the scientists involved knew that these sorts of hard questions would come up, so they really emphasized the human and counseling aspect of the research, in addition to the hard science. These are the types of people who are upset that 23andMe has mostly undone what they were attempting to do by emphasizing a holistic approach to people understanding their own genetics.

Also, I just have to point out how ironic your example is. In fact, this information is rather useless. Phenylketonuria is a relatively easily managed disease, and all children born in the U.S. (and many other countries) are already tested at birth, paid for by the government who did the studies and decided this was a good test to do. You actually didn't learn anything you wouldn't have potentially found out anyway (and at no cost to you).

>One of the really interesting things about the human genome project was that the scientists involved knew that these sorts of hard questions would come up, so they really emphasized the human and counseling aspect of the research, in addition to the hard science.

How paternalistic of them. These questions are hard because they are personal, and not the sort of thing that should be regulated.

>Now, let's say you've met someone and convince them to get a genetic test, and they turn out to also be a carrier, what do you do? Do you risk the 1/4 chance?

That's my choice. Otherwise, it wouldn't have been. Though it isn't that important for phenylketonuria, it might have been a deal-breaker if I were a carrier of sickle-cell.

You're dancing around my point here. Some of the information they provide is iron-clad binary, and can be very useful. Most people may not get more out of it than slight increases or decreases in their relative risk, but some will find out things that are life-changing. The last time 23andMe came up, one HN commentator said that he found out that he was likely to be lactose-intolerant from it, so he changed his diet and it changed his life. He had lived with the symptoms for so long that he just assumed that was how life was supposed to be.

Here's what Sergei Brin got out of it: http://too.blogspot.com/2008/09/lrrk2.html

I don't understand your motivation for wanting to forcibly withhold this information from people.