Step 1: I Purchased A 23AndMe DNA Test

December 6th, 2007 at 1:58 am

My understanding is that 23andme only decodes a couple hundred thousand out of the hundreds of millions sequences in your DNA. It’s also not as simple as just instantly finding out when you’ll die and of what. A doctor or a geneticist will still need to explain to you what all this means. The information here is so vast and complex that for $999 it seems you’re just getting a novelty toy, like someone naming a star or buying real estate on the moon. Fanciful, but then what?

Can’t wait over the next couple of years when this takes off though. Designer babies here we go!

December 6th, 2007 at 2:13 am

Mike, thanks for the holler. I’m equally interested in my potential genetic diseases and in what ways I’ll be able to use my genetic data in the future as the service evolves.

As for my blog posts, I’ll be sharing my unusual disease discoveries. I have no shame.

December 6th, 2007 at 2:33 am

The future may be coming, but nothing is inevitable. If technology doesn’t own us now, then it doesn’t have to in the future either. But I think the important bit is that we cannot own technology as individuals; any defence will have to be a collective one. Health insurance, social protection, civil liberties (and rights) etc: these are political choices, and they can trump technology if made collectively. Let’s ask lots of questions and not waste our vote.

December 6th, 2007 at 3:06 am

I’d like to compliment 23AndMe on their awesome disclaimer. Even if the business can’t make money it will have been worth founding it for that. “Warning: This may cut your arm off”. Rubbish. “This may contain traces of peanuts.” Boring. “This may cause you to find out that you’re adopted and you’re Hitler’s great-grandson but it won’t matter because you’re genetically guaranteed to get spleen cancer within three months.” Awesome. That’s the benchmark against which all disclaimers will be measured from now on.

Myself, I’d rather not know what I’m going to die of. I’d like it to be a surprise. Plus I don’t believe the body - including its DNA - defines who we are that much. It keels over within a mere century, so it would be pretty depressing if it did. You can’t tell that much about a car by looking at the bodywork and the paint job.

December 6th, 2007 at 3:12 am

You are absolutely crazy!!!

I will bet you $100 bucks, (e-mail me - I am serious), that a month after you get the results you will wish you had never done this. One can guarantee that there is something wrong with you, or that you have something that is not perfect and if you plan on having children you will say to yourself the whole time - ahh man I am passing this terrible thing on. Or if they are are sick you are going to blame yourself because you know are XYZ.

It is fine for others to tell you to go ahead and think of the adventure and all the amazing things you will find - but they are not putting themselves out there.

I know you might think - nahhhh how could it be that bad - but I am being totally serious here - Mike this is a bad idea - and one guy to another - buddy don’t do it - Seriously DO NOT DO IT - there is stuff that you are just better off not knowing because once you do it you can never take it back.

Cheers,

Eric

December 6th, 2007 at 3:50 am

I forsee many more contenders and a major legal battle to inherit my ancestral
islands.

December 6th, 2007 at 4:13 am

“I Am Not Posting To Spam My Blog” don´t worry, all links are nofollow…

December 6th, 2007 at 4:44 am

Sounds interesting but we have all been on this Earth for only the past 6 000 years, our great great great grandfathers use to drive dinosaurs to work, so what purpose does this serve other then show we are all children of Moses?

Jon

December 6th, 2007 at 5:55 am

Well I got my results back today, and the good news is that not only am I related to Jesus and Albert Einstein, but I have a proclivity for brain cancer. However, I won’t die from it, apparently I’ll be hit by a train. OK, it wasn’t spit I sent them in the cup, but boy did I have fun filling it.

December 6th, 2007 at 6:40 am

@16: Tell that to Fake Steve Ballmer and all the other green names on TechCrunch making one-line comments.

December 6th, 2007 at 7:16 am

“What if I can’t get health care because of the results?”

You’ll always be able to get health care. But you might not be able to get health insurance, in which case you’ll have to pay for that health care out of your own pocket.

December 6th, 2007 at 7:42 am

This has become a requirement at MS (for all but senior staffers). We find that we can more properly adjust insurance rates on an individual basis. Modern tech is wonderful

December 6th, 2007 at 8:14 am

Mike … congratulations! I really don’t see any downside to this, unlike what faceloop says. You’ll know what science says about you right now. Remember, very few diseases are 100% going to happen if you happen to have a certain marker. Sure, you could be predisposed, but man, how much other cool information will you find out?

Let me ask … do you have plans on sharing any of the info you find?

December 6th, 2007 at 8:32 am

I can see the conservative christians melting over this news.

December 6th, 2007 at 9:53 am

Hey Mike,

you missed out on the leader in the field. http://www.genetree.com/

they were profiled on ABC last night and have dna info on 6 million ancestors. btw they have a facebook and myspace social networking angle too.

the cost is also a lot better from $99-$149

23andme is a rip off at $999… of course I’m sure you got if free for giving this google backed company free press.

December 6th, 2007 at 10:04 am

If you think about it, if the whole genetics thing goes further in the next 20 or so years, Google will have in its hands the DNA of a lot of influential people, then bam clones and gene manipulation

December 6th, 2007 at 10:24 am

Designer babies comment above got me thinking that people would/could use this as a social network if things ever open up that much. How about searching the latest dating site based on the DNA sequence you want to be matched with?

December 6th, 2007 at 11:21 am

As a biologist who has worked in genetics and genomics for most of my career, I can tell you that the information you get will be interesting and fun to think about- but mostly irrelevant to your actual life.

The human chromosome from your mother and father consists of FAR more than just DNA (and this only looks at a tiny slice of that!). Over half of the chromosome is protein (which is at least partially environmentally dependent!), and also there is the bit about the expression of DNA, and an entire host of things we don’t know.

So, for a $1000 you get to know if your grandfather is Hitler, but it really can’t do much else, besides make you worry and possibly expose you to people and policies that don’t understand that genetics is a highly fluid and not well understood area of science.

Even if you are 99% likely to get a heart attack by age 45, what if you are that 1% ? That is a high error rate- 1 out of every 100, and nobody will give you clearer odds than that when it comes to genomic factors.

What about if you simply eat walnuts more often- would that help…or would eating walnuts make it worse? We can’t answer these questions, so it is pretty much useless as a prediction tool- I know- I have tried.

23andMe is setting you up for their ‘Proteome’ service that in 2020 will look at your protein expression profile, and combine that with your genetics profile to really let you know if you should eat those walnuts (Google will display walnuts in all of their adds for you) …then we are getting somewhere… right?

December 6th, 2007 at 11:54 am

@38 - Tim, the ‘Proteome’ service sounds interesting.

I’m excited to see what referrals and suggestions 23andMe provides me once I raise the $999 for a saliva collection kit.

Thanks to everyone who has donated to my campaign so far!

December 6th, 2007 at 12:21 pm

Mike,

did you really actually READ the ToS?

“Your saliva, once submitted to and analyzed by us, becomes our property. Any genetic information derived from your saliva remains your information. We retain the rights set forth in the consent form and any additional terms of service.”

Basically, this means THEY OWN YOU.

“You agree that this license includes a right for 23andMe to make such content available to other companies, organizations, or individuals with whom 23andMe has relationships, and to use such content in connection with the provision of those services.”

Hello GOOGLE.

December 6th, 2007 at 12:30 pm

Even our GOVERNMENTS are UNABLE TO SECURE our sensitive data. How do you want a PRIVATE company to really make sure, nobody else gets your genetic info?

UK leak: http://redtape.msnbc.com/2007/.....ost-d.html

Canada leak: http://www.boingboing.net/2007.....t-can.html

December 6th, 2007 at 12:41 pm

#38 is right. most of the things people associate with knowing their genetic code is pure science fiction. the more you learn about genetics, the more sure you are that we don’t know jack yet.

December 6th, 2007 at 3:18 pm

Insurance Company Attorney (ITA): “Mr. Treadway, when you applied for life insurance did you or did you not initial the line that said, quote ‘I have no knowledge of any genetic defect that might shorten my lifespan?’ That is your signature, is it not?”

John Treadway (JT): “Well, um, er, … yes, that’s my signature.”

ITA: “Thank you. Your honor, I submit into evidence the credit card receipt for $1000.00 paid to 23andMe, a DNA testing service, which is dated 6 months prior to the insured’s application with my client’s company. Further, I submit to you the results of this DNA test which clearly indicate a significantly increased chance of cancer, Alzheimer’s, and hear disease due to obvious genetic flaws.”

JT: “OBJECTION!”

Judge: “Overruled, you pathetic loser… Case decided in favor of Insurer. Next case!!!”

December 6th, 2007 at 3:48 pm

I think the important point is that nobody can change the way they’re made. To quote Jonathan Coulton’s song “That Spells DNA,” “All the good things and bad, that you do or don’t have, you can find out for sure if you got ‘em. But there’s a spirally staircase that you’re fallin’ down, and you’re nothing but dead at the bottom.”

December 6th, 2007 at 11:09 pm

#51 you pretty much described the movie Gattaca

December 8th, 2007 at 7:15 pm

I admit it. I occasionally drool while sleeping on airplanes. Now, I have to worry about health information privacy… and becoming a social pariah.

December 16th, 2007 at 5:47 pm

Recent article from the Economist about how not expect too much from 23andme and its never mentioned competotor, deCode. Now why is it that deCode never makes it into any posts…

Personal genetic testing is advancing rapidly. But beware of overselling

GENETIC testing promises a lot. In particular, it promises to tell people things ranging from their risks of developing ailments as diverse as heart disease, cancer and autism to how much coffee they can safely drink. It also promises a lucrative market for those doing the testing. Single-gene tests, such as those for particular forms of genes that predispose people to breast cancer, have been available for a while. This year, however, has seen the arrival of commercial versions of techniques that can sample a person’s entire genetic make-up, and do so in a way that will enable him to benefit from future discoveries as well as existing knowledge.

In many cases, knowing the risk will also allow (and might, indeed, encourage) someone to modify his behaviour to avoid a disease he is at risk of—or, failing that, to mitigate its consequences. Nevertheless, concerns are being raised about the accuracy of some tests now on the market, and also their usefulness when the results are supplied direct to consumers, rather than with professional medical advice.

Last year America’s Government Accountability Office said that genetic tests it had bought from four websites misled consumers into thinking they were at risk of ailments such as heart disease, osteoporosis and type 2 (late onset) diabetes. In some cases, firms tricked consumers into buying “personalised supplements” that were actually no better than ordinary vitamins, but cost $1,200 a year. More recently, on December 4th, the British government’s Human Genetics Commission published a review calling for greater regulation of genetic tests. One member of the commission recently went so far as to brand them a “waste of money”.

Testing times
Fraudsters can, of course, be found in any industry. But another part of the problem has been the science itself. Eric Brunner, an epidemiologist at University College, London, points out that he and his fellow researchers have struggled for years to try to understand the genetic basis of common diseases. The field is plagued by small, weak studies that are hard to turn into statistically robust conclusions. As a consequence, most findings of associations between diseases and particular genes (which often get reported widely in the media when they are announced) do not stand up to later scientific scrutiny. Yet the pace of commercialisation means that companies have often started selling tests based on the earlier studies by the time their results are discredited.

Paul Pharoah, an oncologist at Cambridge University and a critic of some gene-testing firms, says that in the past tests for a gene called SOD2 have been available, with companies claiming it was associated with an increased risk of breast cancer. However, Dr Pharoah and his colleagues recently published the results of a large study which showed that SOD2 is not associated with breast cancer after all.

With luck, this sort of thing will become rarer as scientists gather more data. However, some people worry that even those tests that do what they say on the packet may not actually give the consumer useful information. A possible example of this is a gene called TCF7, which is the subject of a test marketed by deCODE, an Icelandic firm. One form of the gene, TCF7L2, is strongly linked to type 2 diabetes. Having two copies of TCF7L2 (one from each parent) doubles your risk of getting diabetes—that much is well established. But some researchers reckon that if you do not have any of the other risk factors for diabetes, your chance of getting the disease will be so low in the first place that this doubling is not worth knowing about.

The processes that lead to most diseases are not, however, the result of a single genetic failure. Instead, they involve hundreds if not thousands of genes interacting with one another. In the past geneticists have concentrated on genes that have large individual effects when they go wrong, because such effects are easy to spot. But particular combinations of genes that are not individually significant may also be important.

This raises the question of how many genes a test needs to look at to yield a meaningful estimate of risk. Though the answer is not yet clear, Dr Pharoah reckons it is likely to be more than just two or three. Tests that look at only a handful of genes, he thinks, are simply not useful.

The answer to that, of course, is more information. And it is here that the new generation of genome-wide tests comes in. These tests (which are being offered by deCODE and also by 23andMe, a Californian company) analyse the pattern of hundreds of thousands of bits of DNA known as single-nucleotide polymorphisms (SNPs, often pronounced “snips”). A SNP is a point on a chromosome where DNA routinely varies from one person to another. Many SNPs are associated with disease-causing forms of genes, and more associations are being discovered every month. Indeed, this year has seen a bumper harvest of strong, well-replicated associations between SNPs and diseases such as cancer and diabetes.

Analysing SNPs is not the same as analysing a full genetic sequence. For that to happen routinely, the technology will have to improve a lot (see article). However, deCODE and 23andMe are offering individuals a far broader look at their genes than has been possible before—and, in the case of deCODE, are backing their opinions with original research done by the firm, rather than merely drawing on literature published by others.

Yours, for a SNP
Both firms take pains to point out that what they are offering is an “information service”, not a “test”, and certainly nothing that is intended to diagnose a medical condition. And with his firm’s existing test for TCF7L2, Kari Stefansson, deCODE’s boss, seems to agree that testing for this gene should be prescribed “in most instances” by a physician. However, he concedes that the wide-ranging SNP test will also tell customers how many copies of TCF7L2 they have, whether they have been through a doctor or not.

Whatever the disclaimers say (and one purpose they have is to help firms to avoid regulation) people are clearly going to be getting medical information from such tests. For example, overweight customers who find they have two copies of TCF7L2 really do have something to think about.

In time, of course, the regulators will catch up. Indeed, Dr Stefansson hopes that deCODE’s products will eventually become approved diagnostic techniques, rather than mere information services. But for the moment, this is still an area where buyer should definitely beware.

And that is probably right. The technology of testing is improving fast and regulation risks slowing progress. Moreover, physicians’ calls for scrutiny should themselves be scrutinised, because genetic testing inevitably transfers power from doctors to laymen.

That transfer of power brings responsibility, of course—the responsibility of consumers, aided by the gene-testing companies themselves, to interpret their new knowledge sensibly. If they do not, doctors’ surgeries may be flooded with what have come to be known as the worried well, and regulation is sure to follow. If people do take responsibility, however, a healthier life awaits them.