Genetic Future

The Personal Genome Project, an initiative founded by George Church that ultimately seeks to sequence the complete genomes of 100,000 people, has called for the next wave of volunteers. The PGP will sequence your genome and give you back the data for the bargain-basement price of zero dollars (not bad compared to the $68,000 that the Knome auction is starting at).

The benefits to volunteers are straightforward: you get access to your own genome sequence before most human beings on the planet, and you get the warm fuzzy glow that comes with benefiting humanity. I’m not being at all sarcastic about the latter benefit. The PGP is an audacious experiment in overcoming both the technological and social challenges of providing access to large-scale genetic information, and whatever progress it makes will have a very real impact on the future of human genomics.

Thus far 10 brave volunteers (the PGP-10) have agreed to have their genetic and health data splashed onto the web; two of these intrepid souls, Misha Angrist and John Halamka, have blogs that you can follow. The PGP aims to recruit a further 100 volunteers in the next wave, followed by a further 1,000, and so on until the 100,000-recruit target is reached.

Volunteering to participate is not simply a matter of filling in a few forms: the PGP takes the notion of “informed consent” to a new level, requiring that you prove just how informed you are by taking an entrance test that assesses your “comprehension of concepts relevant to providing informed consent to
participate in the PGP” including “concepts such as
potential risks of participating, project protocols, and basic genetics”.

The PGP has also adopted a bold and unusual approach to data privacy that some may be uncomfortable with – so make sure you know what you’re signing up for

To register for updates on how you can participate in the PGP fill in this form.

Comments

  1. #1 Dan Vorhaus
    April 26, 2009

    And don’t forget Jason Bobe’s blog (http://thepersonalgenome.com/). Not updated as frequently as Misha or John’s but that’s probably because Jason, as Director of Community for the PGP, has just one or two other things on his plate at the moment!

  2. #2 Daniel MacArthur
    April 27, 2009

    Hi Dan,

    Good point – anyone interested in the PGP should definitely subscribe to Jason’s RSS feed for (very occasional but useful) updates.

  3. #3 KemaTheAtheist
    April 27, 2009

    Thanks for this post. I’ve always been interested in learning all about this kind of thing. I’ve been reading books on genetics, ERVs, genetic markers, and all that other good stuff that’s used to trace heritage back. Now I just gotta hope I get chosen. :-)

  4. #4 Donna B.
    April 27, 2009

    I’m curious… why are older people with grown children a desired group?

  5. #5 KemaTheAtheist
    April 28, 2009

    “I’m curious… why are older people with grown children a desired group?”

    If I were to take a guess (and this is only a guess), it would be because it may show a trend where they would be more likely to have a larger family tree. If the family tree is bigger, it would probably also be more likely to have the kinds of genetic markers they’re looking for to trace back lineages and such.

  6. #6 Paulino
    April 29, 2009

    Shucks, must be “Resident of the United States” >:P

  7. #7 Dan Vorhaus
    April 30, 2009

    “I’m curious…why are older people with grown children a desired group.”

    There are several reasons why this cohort is more desirable.

    From an informed consent perspective, participants who are not planning to have additional children avoid potentially difficult decisions about whether to conceive in light of information that they may learn through participation (e.g., with respect to monogenic traits that they might pass on to children). With grown children that decision has already been made.

    Similarly, the PGP encourages participants to consult with first-degree relatives about the risks of participation prior to enrollment. That process is obviously easier and more effective with grown children.

    Also, from a study design perspective, participants with grown children are more likely to generate family trios for enrollment in the project.

  8. #8 laura
    April 30, 2009

    Really hope they’ll include non-US residents in the PGP-1000 or 10k.. it would be nice not to get stuck that early on in the selection process based purely on one’s address.