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Personalized Genetics: Selfome

It’s not about genomes and proteomes any more. Personalized genetics leads to a strange field called selfome where an individual is in the focus. Just take a look at the Quantified Self project, the first personal genome user group.

There are some quite interesting opinions in the blogosphere I would like to share with you. Allie Janson thinks there should be a distinction between recreational and medical genetics.

There is no harm in learning that you have a genotype that makes your pee smell after eating asparagus (a much cheaper option: eat some asparagus, wait a couple hours, and pee). And you certainly don’t need a physician to interpret that information for you. On the other hand, learning that you are predisposed to certain diseases requires a little more foresight and follow-through.

Tim O’Reilly, the father of web 2.0, also has something to say about personal genomics companies selling tests directly to consumers:

I have to say I find myself doubtful about the urgency of this regulatory move. It smacks more of the hand of the AMA, an entrenched industry trying to make sure that the new tools of genetic testing remain under the thumb of doctors, than of true consumer protection.

You have only to walk into Whole Foods to encounter a multi-billion dollar industry of supplements making all kinds of dubious health claims, which is completely unregulated. Why pick on personalized medicine, which has way more substance, and at least so far, way more care in the types of claims it makes?

Jennifer Mccabe Gorman and Matthew Holt attended the US DHHS Meeting on Consumer-Direct Genome Sequencing. Conclusion: We need a high-tech patient advocate service. Yes, and we need doctors who are trained to understand the main problems of personalized genetics. We need a whole generation of doctors who can tell the patients properly about their risks for diseases.

To show you a peer-reviewed article as well, here is a recent publication of NEJM, Polygenes, Risk Prediction, and Targeted Prevention of Breast Cancer.

And do you know how much data your genome is?

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7 Comments Post a comment
  1. Feel like training them with me?

    -Steve
    http://www.thegenesherpa.blogspot.com

    July 15, 2008
  2. Hmm… and what if someday a link between asparagus metabolisum and a serious disease is discovered?
    No, there’s no such think as “recrerational genomics”.
    The medical profession should stick to it’s basics, that is: no diagnostics without consequences for treatment. Knowing genetic information where there is no therapy is unethical and useless – and it can (and I fear will) only be used against you, e.g. when appying for insurance.

    July 15, 2008
    • ashwin #

      Have you heard of GINA?

      Ashwin

      April 27, 2009
  3. Selfome…..sounds a little like Cell-Phone huh???
    Recreational genomics sounds too much like recreational drug use…..
    Who penned that term I wonder….

    -Steve
    http://www.thegenesherpa.blogspot.com

    July 15, 2008
  4. Noddy #

    Actually it isn’t an alteration in the metabolism of Asparagus at all – this is a myth – it is the ability to detect the smell or not…this can easily be established with some asparagus eating and a set of co-operative friends.

    July 15, 2008
  5. Steve, you are training them, I’m just having some ideas. :)

    July 17, 2008

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  1. Genetics for fun, not health « her Nature his Nurture

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