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Genetically Naked?

There has been a serious discussion about the personal genome (a person’s genetic code) in the last few weeks. The beginning of the 21st century is famous for the success of the Human Genome Project, but this time, the subject is your personal genome and it seems to be a complicated task as well.

What is this about?

The Goal of this project is to develop affordable “personal genome sequences” and a variety of user-friendly applications of such data.

So it will make it possible to have your genome (your personal genetic code) sequenced to know more about the future of your health. That’s why I’d like to pledge my life to personalized genetics. Recently, Esther Dyson, a famous venture capitalist, wrote about her decision to reveal all of her genetic data. What are the reasons? Erika Jonietz tells us.

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Blaine Bettinger, the genetic genealogist created a list of the first ten “volunteers” of the Personal Genome Project. I say volunteers, but they probably are very happy to be involved in such an outstanding mission. Jason Bobe, my favourite blogger, would like to know our opinion: is there a real problem in the fact the first people sequenced are famous scientists from the field of genetics?

IMHO, it’s inevitable. To start such an enourmous project, you need big names. After the first sequenced and published personal genomes, we can get back to the army of unnamed samples. Of course, this is not so easy. The comment of Steven Murphy, the gene sherpa, has an important message:

There will soon be a personal genome option. Everyone will be able to have an economically priced copy. We need some guidance on its interpretation.

And now, we’re at the most important point. The techinal part of the whole project will be solved in years, I’m totally sure about it. But the interpretation must be perfect. We’ll have to know how we can tell the patients about their genetic data and their risks for specific diseases. The patient will have to know that they have a choice: personally, I wouldn’t like to know anything about my ApoE4 gene (a susceptibility gene for Alzheimer’s disease), and I wouldn’t like anybody to know anything about it. Sorry for the simple metaphor, but it’s like I don’t plan to take a walk naked as my body belongs to me and I don’t want people to see me without clothes. The situation is the same with my genome. This is my privacy…

In SNPedia, the wiki of single nucleotide polymorphisms (SNP), you can find a list about what kind of SNPs James Watson has. For example, his DNA contains a SNP that may implicate a risk for Alzheimer’s disease. Would you like to make your genome public? Would you like people (e.g. your boss or your enemy) to know your risks for some kind of diseases? Just some further questions:

Sequencing the personal genome is crucial regarding the future of personalized genetics and research. We must support those guys. But my genome is my business…

In this post, I tried to give a clear overview of the Personal Genome Project and the recent discussions about it from the point of view of a medical student who plans to work on the field of personalized genetics. Your comments would be most welcome!

Related links:

Update: Ken McClellan’s comment has a great message for all of us:

Studies like this are opening new branches of medicine, tracking down cousins, updating our understanding of evolution, and preparing us for what’s next. Every hero has a chink in his or her armor — or an Achilles heel. I’m hoping being up-front about it will help build a better world for the grandkids.

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14 Comments Post a comment
  1. Berci,
    I love the post. You always have a nice way of organizing this data in a way that the reader can use effeciently. I wish I could have such a skill. I think if we all work together that these problems will begin to vanish. Knowing what I do now, I would walk naked. I admire these people for having the foresight to do this. That being said, they have the money to say……I don’t care about health insurance. Personally I would love to be the iternists for this fantastic 10. But everyone must think about the repercussions of making their genome naked, I whole heartedly agree.
    Great Job Berci,
    -Steve
    http://www.thegenesherpa.blogspot.com

    August 2, 2007
  2. Great article, and great questions! Your last question is already law, entities can’t legally patent entire genomes, at least in the U.S.

    Your headline could have been written better. Something like “Exposing your Genome to the World” or possibly question form as “Should personalized genomes be public domain?”.

    Looking forward to seeing more articles in the future!

    -B

    August 2, 2007
  3. Thank you for the kind words! :)

    Steven: I wish I knew as much about personalized genetics as you!

    Branden: You know well, it’s the world of buzzwords. If the headline would be something like Public genome, noone would read it…

    August 2, 2007
  4. Thanks for weighing in everyone. Steering through the choppy waters of early genome sequencing will require a group effort, that much is for certain.

    August 3, 2007
  5. Kim #

    If my naked genome is as bad as the rest of me in that same state, I’m in baaad trouble! : D

    August 9, 2007
  6. Lol, Kim! :)

    August 9, 2007
  7. Ken McClellan #

    We all get to die of something. If looking into the mitochondrial crystal ball can help you shape decisions on what to do with the rest of your life, why not take a look? Anyway, I posted my 67 Y-dna markers on FTDNA and DNA-Forums and my whole mtDNA sequence is on GENBANK and the other sites. If that gives someone a clue about what I might suffer or die from then they’re the kind of odds maker that ought to spend more weekends in Las Vegas! As for me, it’s been expensive but rewarding to contribute genetic science’s advance. Studies like this are opening new branches of medicine, tracking down cousins, updating our understanding of evolution, and preparing us for what’s next. Every hero has a chink in his or her armor — or an Achilles heel. I’m hoping being up-front about it will help build a better world for the grandkids.

    August 13, 2007
  8. Thank you, Ken, in the name of the whole scientific community! This is the right thinking! I must update my article with your last sentence… :)

    August 13, 2007

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