Resolved: This house believes that people's DNA sequences are their business, and nobody else's.

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The above proposition is being debated over at the Economist magazine by University of Pennsylvania bioethicist Arthur Caplan and pioneering human genome sequencer Craig Venter. Caplan argues:

The main reason why your DNA and any data derived from it should be yours to control is that they are intimately linked to your personal identity. And your identity is an asset that should not be taken from you or accessed without your express permission.

genetic privacy

Venter basically replies genetic privacy is dead, so just get over it and help humanity out: 

In this world of instant internet, Facebook and Twitter, access to information about seemingly everything and everyone, the idea that we can keep anything completely confidential is becoming as antiquated as the typewriter…So while we all have a right to disclose or not to disclose, we have to move on from the equally antiquated notion that genetic information is somehow sacred, to be hidden and protected at all costs. If we ever hope to gain medical value from human genetic information for preventing and treating disease, we have to understand what it can tell us and what it cannot. And most of all we have to stop fearing our DNA.

Genes are not occult or special, and while they can be used to identify you, they are certainly not your identity.

Dip into the debate here

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  1. In this world of instant internet, Facebook and Twitter, access to information about seemingly everything and everyone, the idea that we can keep anything completely confidential is becoming as antiquated as the typewriter…
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    Yeah well some of us do not like facebook, myspace twitter etc. myself being one of them. my private life is just that. it does not need to be broadcast across the universe for all to see. My DNA is the same. it is me, and only I can say if i want it out for the world to see. Yes many people do use facebook etc and have everything down to thier boring mundane details of thier life on it. But Some Americans still like to go about thier private buisness privatly, and no one should be able to step on that.

  2. Genes are not occult or special, and while they can be used to identify you, they are certainly not your identity.
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    True and finger print ridges are nothing occult or special, we all have them. but combined with the other ridges, patterns, just like genes in DNA it gives you your identity to others. so no genes are not your idetity, but DNA is the collection of them in a specific order, aka a fingerprint, and =’s your identity

  3. Facebook allows you to limit who knows important and stupid things about you, at your discretion. Strangers accessing your DNA without your permission is not at all the same.

  4. Venter: “DNA is just like Facebook, lol!”

    Me: Go fuck yourself, you ignorant, statist twit…

  5. Venter is better at self-promotion than biology.

  6. Bioethicists have no more intelligence than you do. But they have one thing you haven’t got — a PhD.

  7. Bzzt! Sorry, no. My unique genetic information does NOT belong to the rest of humanity.

  8. Dont leave your DNA around for a stranger to look at it. You leave it on my stuff, I might analyze it. And publish it.

    Tough luck.

  9. I do not avoid bioethicists, but I deny them my essence…

  10. You leave it on my stuff, I might analyze it. And publish it.

    Just one more reason why Epi should stop humping your couch.

  11. To jump off of what robc said, what are you guys going to if typing becomes as easy as it is portrayed in Gattaca? Outlaw typing? Subject DNA to copyright laws?

  12. I’m too smug and lazy to RTFA, but isn’t Venter just saying that (kind of like music piracy) info is going to get around and there’s not a lot you can do about it, so you might as well just embrace it?

  13. Just one more reason why Epi should stop humping your couch.

    That was a couch? I thought it was a fat chick.

  14. since the two lend themselves to analogy well, somebody should get around to inventing a device that listens to music and can write the sheet music for you.

  15. All: Odd. I don’t really care who gets hold of my DNA and sequences it, but I would really care a lot if someone could accurately read my thoughts from my brain just by pointing some device at me. That would be a real invasion of privacy.

  16. Ron, you wouldn’t mind them going through your medical records though?

    That’s a more analogous situation than mind reading, and it’s one I would dislike personally.

  17. I don’t want someone to slell my DNA…

    (If you caught that reference, you might be a transhumanist!)

  18. Bioethicists have no more intelligence than you do. But they have one thing you haven’t got — a PhD.

    Or an MD. And, as a group, I would imagine they tend to have a higher mean intelligence than the average person reading a political blog (even Reason).

  19. Look, they can’t even make a device that distinguishes between Cylon DNA and human DNA. Yet. What are you guys worried about? Hiding something?

  20. And my DNA is my business and nobody else’s.

    I’ve donated my DNA for multiple studies, and I generally check the box allowing them to use it for other future studies as well. But that’s my choice. I also choose to donate a large portion of my income to help animal shelters, it doesn’t mean everyone else should have to.

  21. Lib Dem: Actually medical records contain phenotypic information that one might find embarrassing to disclose, skin conditions, past ‘social diseases,’ sexual dysfunctions, etc., all of which could affect one’s self-presentation to the world or what the Italians call presenting a “bella figura.” Medical records would reveal actualized frailties rather than the probabilities that genetic info contains, which I think is far less troublesome.

  22. I agree with you Ron, I think in many ways it is an intermediate between mind reading and DNA sequence, but closer to the latter.

    Is the disinclination we feel towards sharing our medical information solely because of embarrassing conditions?

    For example: say someone suffers from hypertension, or even was treated for cancer. They might have no symptoms, but they are at higher risks for dying prematurely in the future. Is there no legitimate reason to want to keep our risks private?

  23. “Medical records would reveal actualized frailties rather than the probabilities that genetic info contains, which I think is far less troublesome.”

    Mr. Baily,

    If during his presidency, the press had managed to get a copy of W’s DNA, they would have had a field day. Especially that Olbermann guy.

  24. OT: I just got an email from the Libertarian Party with the following announcement:

    Fox News Channel’s Judge Andrew Napolitano hosts “Freedom Watch” every Wednesday at 2:00 p.m., on FoxNews.com’s “Strategy Room.”

    It’s an online libertarian program with libertarian hosts and guests streamed live every Wednesday at 2:00 p.m. Eastern, and your online support can help put Judge Napolitano’s show on television on the Fox News Channel!

    Anybody seen this show?

  25. What about angel DNA, Epi?

  26. JP, Freedom Watch is great, though the production is somewhat amateurish. Ron Paul, Peter Schiff, and Lew Rockwell are guests most episodes.

  27. Medical records would reveal actualized frailties rather than the probabilities that genetic info contains, which I think is far less troublesome.

    Time will come when the probabilities come closer and closer to the expressed phenotype (at least for certain cases). Less troublesome doesn’t mean troubleless.

  28. Yeah. What val said.

  29. What about angel DNA, Epi?

    If you watched Supernatural you’d know that angels don’t have DNA.

  30. Warty — Thanks!

  31. Don’t worry, Epi just watches it for the hot guys.

  32. Ron Bailey, I understand that you don’t care what someone does with your DNA, but the point is not what can be done with it but that we should all have the choice to say “no thanks.”

    Maybe I don’t want to know my risks. Knowing I am at risk might change the way I live my life. I might worry too much about my impending doom. That’s not necessarily a good thing.

  33. Out of curiosity is there a DNA testing place that will give you a completely listing of everything that your DNA might be associated with?
    Most of what I’ve seen just has tests for specific things.

  34. Naysayers: I didn’t see anything in the post telling you that you should be forced to turn over your genetic information, just that the Information Age (blech) is going to make that a fait accompli. Unless, again, you want to make it subject to copyright.

  35. TAO,

    I’ll just make my DNA sequence into a 500 hour bleep and bloop “opera” and let the RIAA fight it out for me.

  36. HM,

    Ron can answer it better but I believe the one he used gives you your complete sequence including the things they have no fucking clue what it does or even if it does anything.

    Thus, in the future, you could check it against future discoveries.

  37. Hazel Meade, there’s a company called 23andme that does what you’re asking about.

    I have to tell you, though, that their results interpretation is shoddy.

    This fear of DNA is creating a huge obstacle to personalized medicine. No, I’m not talking about designer custom drugs (although those would be nice) and I’m not talking about disease risk (which scares many people)… I’m talking about pharmacogenetics. Knowing that this drug or that will or won’t work for you or, better yet, knowing which ones will kill you, is valuable information.

    I can’t say I agree that our DNA should be freely available to any and sundry, but it isn’t to be feared. It provides priceless insight into our health and our ability to benefit from therapy.

  38. (Where I work, we test for certain things, all having to do with your ability to metabolize and respond to drug therapies.)

    We don’t do disease risk studies.

  39. The moderator sez: “It is only recently, for example, that whole new classes of gene whose products regulate the functions of other genes, rather than being used as templates for the manufacture of proteins, have been identified.”

    How is he defining “recent”?!?

  40. How is he defining “recent”?!?

    Last 100 years?

  41. Correcting my 3:23 post, unless I cant find it, there isnt a commercial company that provides a COMPLETE sequence. yet.

  42. I think he’s talking about regulatory RNAs, and those have been known for at least 20 years.

    You don’t really want a complete sequence, anyway. At least, not one that isn’t annotated. It wouldn’t make any sense.

    23andme just provides shit interpretations. Or, rather, bullshit interpretations.

    OPRM1, for example. The only thing they say about an OPRM1 homozygous variant is that you’re likely to become a heroin addict.

    *facepalm*

    It hardly means that, at all, but it is meaningful and important. Their glossing over of the genotype creates more ignorance, and actually provides a disservice.

    This is unlibertarian of me, I know, but I don’t think people should get this information without it being run through an intelligent interpreter.

  43. Bronwyn,

    Assume I know next to nothing about this (which is basically true), wouldnt a series of ATGCs (hopefully I got the right letters 🙂 )* be useful? At least sometime in the future?

    * http://www.xkcd.com/541/

  44. “We have to move on from the equally antiquated notion that genetic information is somehow sacred, to be hidden and protected at all costs.”

    No we don’t.

  45. SugarFree | March 24, 2009, 3:01pm | #
    TAO,

    I’ll just make my DNA sequence into a 500 hour bleep and bloop “opera” and let the RIAA fight it out for me.

    aspartame, this should help you out:

    http://www.doe-mbi.ucla.edu/cgi/pettit/gene2musicweb

  46. I hereby claim any twin of me or clone and all beings containing any 2 digit sequence similar to my DNA as my property.

    Urkobolt can go screw herself.

  47. Bronwyn, i agree with you personally, and made my DNA public on 23andme voluntarily. I hope that many more people will do the same to achieve a better outcome for humanity – but I would never dream of using legal force to achieve that end. it’s not for everyone, irrational though the fears may be.

  48. Why do females claim to have a right to make a semi-clone of me simply because I deposited some DNA…

  49. I could see the insurance companies having a huge interest in this.

  50. robc, raw sequence would be useful only if you ran it through sequence analysis software, which could pick out the open reading frames and regulatory sequences, introns, exons and so on. A trained molecular geneticist like myself can look at raw sequence and identify certain features, but no one can look at it and say, “this guy’s got brown hair and a penchant for gambling.”

    The reason many people fear disclosure is the knowledge that insurance companies will use any excuse to deny coverage or ramp up deductibles and premiums.

    Oh, 23andme also can tell you whether or not your ear wax is wet or dry. I’d like to think that sort of information would already be known to most people.

    Sorry… I roll my eyes, but this consumer genetics stuff makes it very difficult to break through to people with the really important information that can be found in their genomes.

  51. Why do females claim to have a right to make a semi-clone of me simply because I deposited some DNA…

    domo, you gave a woman something and expected her not to hold onto it and potentially use it against you later?! Welcome to Earth, enjoy the veal.

  52. t is important to make sure that all of your medical records are safe and secure which is why I am thrilled that they are going to be turning all medical records into electronic medical records. I feel allot safer knowing that not just anyone who stumbles into the office can look through my medical records and steal all of my personal information.

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