Towards a DNA commons?

23andme logo23andMe, Inc. is a private for-profit organization that offers DNA analysis and information to individual consumers. DNA collection is collected through a $99 at home saliva sample collection kit that is then mailed back to the company for genome mapping and analysis. Individualized reports and personalized health recommendations are then delivered to the consumer over the internet via a personal homepage on the company website. In addition, consumers are given the opportunity to share their genomic data with doctors, researchers, scientists, hospitals, and other individuals within the online community that are members of the organization. The company website states that 90% of their customers have opted-in to participation in their research. While the individual consumer can opt into sharing the data with other members at basic or extended levels or opt out of sharing entirely. The company website states that each individual has the opportunity to “contribute to science’s understanding of how genes interact with the environment to make individuals who they are” and “participate in research that could improve understanding of how genetics influences our lives”. This privately-held company, however, owns and controls the aggregated data which may raise questions about ethics and the commodity value of personal data to pharmaceutical companies, hospitals, governments, etc. The company states on the website that one of their core values is the encouragement of “dialogue in the ethical, social and policy implications of personalized genetic services”, but questions remain about the value and usage of individual and aggregated genetic data.

 

One thought on “Towards a DNA commons?

  1. A quick follow up on 23andMe’s ethical issues addressed by Dr. Janssen in his posting – they appear to be mounting. On November 26, 2013, Andy Coghlan of New Scientist magazine reported that 23andMe has been ordered by the FDA to stop selling their genetic test due to “concerns about the public health consequences of inaccurate results.” In particular, Coghlan reports that “[t]he FDA said that after several interactions with 23andMe, including
    more than 14 meetings and hundreds of email exchanges, the agency still
    hasn’t received any assurance that 23andMe has analytically or
    clinically validated their tests for their intended uses.” For more information, see here: http://www.newscientist.com/article/dn24656-23andme-ordered-to-stop-selling-99-genetic-test.html#.UrSB2-L9ylo
    Here is a link to the FDA letter: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm

    Reasons why healthcare should not be in the hands of private, for-profit companies…

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