Tonight I bit the bullet and bought a DNA test from 23andMe’s new Personal Genome Service. This wasn’t an easy thing to do. Quite frankly I fear what may be disclosed to me after spitting in that plastic cup and sending it off for analysis.
On the one hand, I can’t wait to find out interesting things about myself, like:
- Do your genes help you sprint faster?
- How well can you taste bitter foods?
- Do you share maternal ancestry with outlaw Jesse James?
- Are you more similar to Mayans or Basques?
But I’ll also get all kinds of information about genetic diseases I might be more or less likely to get over time. Do I really want to know?
The massive terms and conditions agreement didn’t help to calm me. The section called “Risks” mentioned a number of things that I hadn’t thought of - like the fact that my dad may not actually be my dad. And that the information I receive may alter my life and worldview.
But what really worries me is that last sentence above, about social, legal or economic implications of discovering this information. What if this information becomes public? What if I can’t get health care because of the results? Call me a luddite, but this is a whole new class of private information that previous generations didn’t have to deal with. Our laws are waaaaay behind the curve here when it comes to protecting us.
The kit comes soon. After I spit and send it back, the analysis starts and in 4-6 short weeks I’ll be able to, as New York Times writer Amy Harmon said, “Google my DNA.”
23andMe has strong security features in place to keep my information fairly secure. But there’s a big hole in the plan - what if I simply send in someone else’s spit? What if it’s someone I’m thinking about marrying? What if someone does that to me? There’s no way to stop people from spending $1,000 and getting a full genetic download of ME, in all my flawed glory.
Anyway, no time to worry about that now. The future is coming, and I want to know. I just hope that there isn’t something horrifically genetically wrong with me that sends me to a futuristic version of a leper colony should anyone find out. Look for updates here - if I go strangely quiet, you’ll know somethings up.
And if a stranger (or loved one) asks you to spit in a cup, you’ll know to be more than a little suspicious.
By the way, if you want a play-by-play of someone who’s going to blog about his experience with 23andMe, check out former TechCrunch Intern Andrew Meyer’s new blog post “Help Me Decode My Genome by Christmas.” He’s asking for donations to get to the $1,000, and he promises to track his experience on his blog. Help him out, or just lurk for free and find out if Andrew has good marriage material.
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Don’t forget, what is intriguing now will be commonplace for our children.
We will probably know what illnesses we have a genetic proclivity for (and hopefully seek treatment) - as well as being able to trace all sorts of historical paths of our ancestry and ultimately, the entire human race.
What would be fascinating to to find out is:
Did Cro-magnum and Neanderthals man integrate into modern man.
It just does not seem likely that they died out completely, when so many less Human Like species evolved that had neither our intelligence or our athleticism.
Also, what paths did eary Humans take out of Africa and what lineages ended up where?
right, i get that. but i’m still wondering about health care.
Mike,
I can tell you a little freaked out - but I will say this. To send in someone elses DNA or for them to send in yours - you/they would have to ask to spit into a glass for about 15 minutes. I think if someone asked me to do that:
1. I would be freaked out they were asking me that in the first place.
2. I would ask them why they wanted me to spit into a friggin plastic cup.
3. The ball would drop and I probably would immediately interrogate them in regards to DNA profiling. (unless alcohol was involved and they suggested it was a party trick)
So I think you can safety put that fear to rest. The rest of the things you mention however, I agree with.
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!
In 10 years there will probably be scanners you point at someone to read their genetic profile immediately. Or maybe all they will need is to point such a scanner at any residue from your body, say a fingerprint. This scanner will be as small as a USB flash drive now. Everyone will have one.
Governments and health care plans will love this. People will take to wearing gloves all the time and burning their tissues. Others will use this technology and easily available information to concoct special poisons that will only apply to a specific genetic type.
Still others will use it to choose a mate.
The potential uses and abuses are endless……
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.
Why the f* are you giving your DNA to google!!!! you are one crazy mofo!
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.
You will feel no pain as you join our collective. Relax. Enjoy.
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.
“But what really worries me is that last sentence above, about social, legal or economic implications of discovering this information. What if this information becomes public? What if I can’t get health care because of the results?”
If they agreed not to disclose the results, you could sue them for damages related to that happening. Unless you checked a box that waives them from damage claims, in which case you’re fscked.
If the information is not hacked or leaked, then you can simply not disclose it.
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
Too bad they don’t ship abroad.
I forsee many more contenders and a major legal battle to inherit my ancestral
islands.
Google invested in 23andme and Sergey is on the board (his wife is the CEO), so don’t be surprised if your DNA info eventually becomes part of Google’s “sorting *all* the worlds data”
they might have DoubleClick able to access your DNA
“I Am Not Posting To Spam My Blog” don´t worry, all links are nofollow…
@ Arrington: So are you gonna be a sport and share at least some of the results?
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
Just keep an eye out for the following: Mike gets test results, they say he’s a likely candidate for Alzheimers. Next day, Google ads for supplments to help the mind start showing up. Co-in-ki-dink?
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.
This is all exciting stuff, biotech 2.0.
Because decoding individual genomes is still so expensive, these methods have barely started to scratch what is possible.
Once you know your profile, keep an eye on the advances on gene therapy, which will allow you to change your genetic destiny.
@16: Tell that to Fake Steve Ballmer and all the other green names on TechCrunch making one-line comments.
That’s so funny Mike - I did mine yesterday too.
I’m hoping like hell my results come back and I’m the illigitimate son of Bill Gates.
Paydirt!
“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.
this is like playing russian roulette with a bullet in every chamber.
taking this test has the potential to take away all good in your life. if you want to contribute to science, check the box on the back of your drivers license.
destroy the kit when it arrives.
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
Your a f* early adopter !!! I am really impatient to see the results and what kinf of useful info you can get from. Because I think, if you go to the hospital they can tell you about your genome.
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?
This is a absolute joke, or your attempt at getting another 150 response post like the Dan post got you.
How will you know if any of this (what they report back to you) is even true, another attempt a people playing God.
Prepare for lightening and thunder oh he heathens.
I can see the conservative christians melting over this news.
Mike,
You could take the route of Ethan Hawke in Gattaca and send in a sample of a “better human specimen”.
Abhishek
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.
here’s some more info on what was presented on the ABC Nightline show with Martin Bashir if anyone is interested…
by MARTIN BASHIR
Dec. 4, 2007
“Where are you from?”
It’s one of the first questions we ask one another. But even though national identity has been used to divide people for generations, nationalities may be more closely connected than we ever imagined. Genetic science is beginning to create a new understanding of human ancestry.
Video
The Secrets in Your DNA
Scott Woodward, chief scientific officer of Sorensen Genomics in Salt Lake City, is now giving people the chance to trace their lineage by using their DNA.
Formerly specializing in paternity testing, Sorensen spent $40 million building the largest DNA database in the country. Over the last seven years, it’s collected 100,000 samples of maternally inherited mitochondrial DNA, considered the purest form of genetic inheritance because it barely changes through the generations.
New samples are continually being added to the database, which was conceived by 86-year-old entrepreneur James LeVoy Sorensen. He doesn’t give interviews, but “Nightline” spoke with his son David who is in charge of the company
“Dad is a man of faith. He believes in God. He believes that we’re all brothers, that we all share connections,” David said. “He believes that there is a genetic Adam and Eve that we all descended from.”
DNA Facebook?
Sorensen researchers have collected DNA from 172 countries — more than 90 percent of the world. From Austria to Australia and almost everywhere in between, the company’s global research is recorded on video.
“Just recently we sent a team to Mongolia. Mongolia is a very important part of the world. If you look during the period of Ghengis Kahn and all the parts of the world that came under his subjection, we collected 3,000 samples with genealogies there. We are in the process of getting 600 samples from Iraq right now: 200 Shiite, 200 Sunni and 200 Kurd,” David said.
I asked what prompted Sorenson to spend millions of dollars putting together a DNA database.
“I think the hypothesis was that if he could get any two people in a room, and through this database show them how they were related and where they came from and how they belonged … that this would change the way they would feel about each other. That instead of animosity perhaps they would feel a connection and that would lead to a more peaceful environment,” David said.
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
Hi Mike-
So what are you going to do if you ever apply for a new life insurance policy and they ask you if you’ve ever had genetic testing? They ask that now a days.
There are certain laws in place that provide protection from genetic discrimination in the workforce and health insurance (they vary from state to state), but life, long term care and disability insurances? not so much. They have every legal right to ask about your genetic testing history. If you choose not to answer, they can choose not to cover you.
Just something to consider while you are waiting your short 4-6 weeks. You may want to double check your insurance coverage and be sure you are happy with it. You may be running the risk that you won’t ever get more.
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?
On a personal note this would be extremely valuable if it could help cover gaps in family medical history. My father was adopted and has no idea of his medical background. When I answer questions about my family’s medical history it is limited to one side. I would be curious to see what this can offer those who do not have access to their families history for whatever reason.
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?
Check out the Wikipedia entry for “incidentalome” - all the incidental (and unwanted?) extra stuff being generated in healthcare right now, including by 23andMe and the like.
@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!
Who said our government isn’t watching out for us?
http://www.genome.gov/24519851
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.
TomDogg - no, it means they own my saliva. you’re really twisting the TOS language to make it seem like it’s saying things it isn’t.
I don’t think 23andMe is being very smart about PR and marketing, but the stuff you point out isn’t menacing.
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
@42 TomDogg, you should read the TOS again. They own the saliva but “Any genetic information derived from your saliva remains YOUR information.” .
I think they are saying they are providing a place for you to store and search YOUR genetic info (that you control). And, if you want to you can use YOUR genetic data to receive services and products from external “companies, organizations, or individuals” (which you also control).
#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.
This company is a joke! And SCARY! It never would have seen the light of day if it were not for someone being married to a Google guy. Gee, trust them with my DNA? Duh! No way!!! Please see the interview with the Company management on Wired Science. Parts of it were just silly…as if I am going to seek out other people with a gene for athletics and then socially network with them. H-i-l-arious! And SCARY!
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!!!”
@ 43:
Why do they want to own all their clients’ saliva?
There seems to be no valid reason for that: it almost costs nothing to send them another sample of saliva in the future, should you want to run another test.
If they “own your saliva” it becomes their property and you therefore loose any kind of control over it, meaning:
- they can do whatever they want with it (i.e. 1) extract information you have never requested to be extracted, for whatever use they see fit in order to create profit or 2) forward or even sell it to whom they see fit - unless they somewhere explicitly state the opposite),
- you won’t be able to force them to destroy it,
- you won’t be able to have them send your saliva back to you.
Honestly, I would never blame Mike for not handing them over his saliva. I’d rather see it as a proof for common sense.
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.”