Personal Genomics

The Open-Access Era

5 Comments 28 April 2009

We are entering an age where online “openness” is becoming a societal norm. Social networking websites, such as Facebook and Myspace, have attracted hundreds of millions of users who post pictures, full names, addresses, and telephone numbers on the internet. While the overall goal for these sites is to facilitate social networking, there are obvious dangers whenever personal information is posted on a public domain.

The Personal Genome Project intends to fully sequence the genomes of its participants and publicly post each sequence online along with complete medical records of the participants. This combination of genotypic and phenotypic information being made publicly available entitles the participants to no privacy and stands in stark contrast to the current paradigm of clinical trials.

Understanding the actual risks associated with this type of open disclosure study is not a simple task. The diametrically opposed beliefs between the generations accustomed to online social networking and those of the baby boomer era result in a bimodal distribution of comfort-level with any type of online storage of personal data. However, the expansion of personalized genomics is contingent upon the acceptance of this form of study, since sequence storage is a requisite tool. As such, finding common ground between the generations is of fundamental importance as the “$1,000 Genome” nears fruition.

Alas, we must wait and see.

Your Comments

5 Comments so far

  1. Zoran says:

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  3. Gadhadhraya says:

    There is obviously a lot to know about this. I think you made some good points in Features also.

  4. onion says:

    good work here
    onion

  5. loan says:

    cool nice site


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