Incredible, unsettling, unprecedented. I say let's do it.

[flexagon]

I was in Starbucks earlier today. My coffee was drained, my knitting was done, when on the way out the door I noticed a newspaper article about 23andme.com, which for $999 will read about 600,000 points on your genome (more about that) and tell you everything that genomics has to say about you.

The author of the newspaper article wasn't sure at first that he wanted to do it. As the website says, "you may learn surprising things about yourself".

There is a chance you could be surprised by what you learn about your genome. For example, you could discover that your father is not your biological parent. You could learn that individuals with your genetic profile are at increased risk of developing a currently incurable disease. You might learn something unexpected about your ancestry. In certain cases, these discoveries could have social, legal or economic implications.

The author wasn't sure he wanted to know his odds of getting various horrid, long-term diseases, and he wasn't sure he wanted to find out he had a genetic predisposition for something he was good at (or wasn't). He really doesn't want to get his daughter tested, not wanting either one of them to believe too much in any kind of genetic predestination for her. (One wonders if he even considered learning he wasn't her father.)

But do I want to know these things about myself? Yes, yes, in a hot moment. Yes, in a cold-blooded lifetime. I believe the coming revolution in personal genomics is going to be huge, and there are plenty of ethical and legal issues yet to be hashed out, but most importantly I want to know. I want to know everything. As some of you know, my father's entire family tree is rotten with cancer; my mother's is not at all. I eat my vegetables, but this process will tell me so much more than all the guessing I could ever do, and much more than how much broccoli to eat. And 23andme is the best option out there, it would seem; this article mentions some other companies in the same space, but they're all much less focused on health informaton for individuals.

The experience is simultaneously unsettling, illuminating, and empowering, says a Wired news article from earlier today.

I'll take that deal. I hope that one of my parents will, as well (to satisfy a much more idle curiosity for me, telling me only what came from which side, but of course just as vital for that parent as learning my own information is for me). And, really, I would urge you to do it or think about it as well. Know thyself. Why? Because life is scary, but the ground truth is out there, and knowing it is maybe the most amazing chance we've ever had to see what's coming and act accordingly.

Comments

[flexagon]

Oh, by the way, they charge $10 to ship you the saliva kit, so prepare to spend $1009 to follow me into the brave new world.

I also want this link to be attached to this post: SNPedia, a website about specific gene variations that could come in handy when I get my results. Really hoping to find I have rs3135506, which prevents weight gain from high fat diets... ;)

[cook-ting.livejournal.com]

I liked the article, but I'm a little uncomfortable having my gene sequence in the hands of a private company.

[flexagon]

I expect that attitude will be really common at first. (Though I also expect they won't be a private company for long.) For me, those concerns are COMPLETELY overshadowed by the prospect of finding out the truth about my cancer risk.

(I also realize I didn't mention you have the right to delete your data. You have to request it be done by 30 days after the offer though, it's not instant, and of course you're trusting them to comply...)

[heisenbug]

Would you be more comfortable with it in the hands of a public company, a government, an individual you don't know, or a nonprofit organization? Assuming each of the above would promise in legally-binding writing to keep your data private.

[cook-ting.livejournal.com]

I suppose I'm just generally distrustful. I'd prefer no one have it but me and perhaps my doctor if I could be sure it wouldn't be shared with the insurance company.

[flexagon]

Home sequencing kits are just such a long, LONG way away.

[cook-ting.livejournal.com]

I guess I also don't have a pressing need to learn about my health risks. I'm a pretty good copy of my father, so I already know what my future holds if I don't take care of myself.

I can definitely understand your reasons for having it done. Cancer is an absolute terror and finding out about genetic propensities would be exceptionally valuable if you've seen a chain of it on one side of the family. You'll have to keep me updated, because I'm fascinated by the process and data despite being uncomfortable with the situation.

[flexagon]

I will definitely write more about it. :)

[body-alchemy.livejournal.com]

Ooh, exciting! We don't have the money for it right now, but please let us know what you find out :).

[flexagon]

I understand. It is pricey... not compared to the benefit it offers, though, in my opinion. The price may come down later, maybe even soon (and I hope it does, and I realize I'm paying the "early adopter" fee to help that happen, which is fine with me).

I think the odds are 90% that seeing the lab results will change how I look at life. I'll definitely post about the whole experience! It takes a few weeks to get results, though.

[a-kosmos.livejournal.com]

I think the odds are 90% that seeing the lab results will change how I look at life.

More details please!

[flexagon]

Well, knowing (probabilities) about the future can do that, right? :)

To look at something that's already happened, I almost got LASIK a few years ago but ended up backing out. One reason was that, as I was studying the process, I learned that people with my degree of myopia almost always get cataracts and need lens replacement surgery in their 50s, and vision can be corrected with lens replacements too. That helped me decide not to go for vision-correction surgery just yet, knowing that I'd have a good shot at another one later that wouldn't damage my corneas.

Less verbosely and more on track: There are things that might be cool to know (that SNP that helps to not gain weight on a high-fat diet, just for gloating purposes if I have it), things that could be useful to know (I'm not very sensitive AT ALL to opiods. I've heard this is genetic. I might get confirmation of that, and it might help in some future hospital situation).

And then with the perspective on life stuff, there will be numbers on the major diseases, which of course factor into expected life span. I figure that if I find I have a low chance of cancer (based on genes alone) I'll be utterly delighted and my family will be too; if I find it's really high, then I'll know that and be able to plan and make more lifestyle changes accordingly. (I'm mostly thinking about diet, exercise and supplementation here, but yes, if I find out I'm likely to die young I'll definitely try to do a little less putting things off, and less planning to work my ass off until age 60.)

I had a good friend try to give me the "genes aren't your destiny" talk this morning, which was kind of embarrassing because I know that (duh). But they are about half of destiny. ;) Knowing the indicators gives me a chance to DO SOMETHING about them, if need be, that's the whole point!

Insert disclaimer here about rambling because I have insomnia.

[hiddenbear.livejournal.com]

There is one gigantic risk ... at some point insurance companies may find a legal way to get your results. Even if they have been 'deleted' from the records. This could be catastrophic, and I think a very serious reason to be wary. If it turns out you are likely to get cancer in your forties, and your insurance company finds that reason to not insure you, then you are fucked.

Not knowing is very important when it comes to being insurable.

[flexagon]

Yes, you're right -- some wheels are already turning to prevent the catastrophe, though. From https://www.23andme.com/help:

...the fear of discrimination by insurance companies is one of the main reasons people hesitate to pursue access to their genetic information. We want you to understand the laws that protect you, as well as their limitations.

As of November 2007, no comprehensive federal legislation has been enacted that protects Americans against genetic discrimination in individual insurance coverage, but we are hopeful this will change in the near future. The Genetic Information Nondiscrimination Act (GINA) was approved by the U.S. House of Representatives in April 2007, and is currently on hold in the Senate.

If GINA is successfully signed into law, two types of discrimination will be outlawed. First, insurance companies will be prevented from requiring you to reveal your genetic information to them, and from using this information for enrollment or premium decisions. Similarly, employers will not be able to make firing or hiring decisions based on genetic information, nor will they be allowed to require you to provide genetic information to them.

While GINA is not currently law, individuals are protected by a variety of federal and state laws and regulations. The National Conference of State Legislatures provides useful tables that detail laws pertaining to the protection of genetic information in the United States. For example, in California, individual and group insurers are prohibited from requiring an individual to provide genetic information, from using genetic information to decide eligibility or risk status, and from disclosing such information without consent.

In addition to legal protections, many insurers are clear about the value of genetic information and are developing specific guidelines about its proper use. Aetna is one example of this trend.

It would be more prudent to wait until GINA or something similar passes, but for me personally, I can't know this is out there and let it wait.