Genewatch.org reported in April that a gene-testing company with close ties to Google "has been in discussions with the Department of Health about access to genetic information from biological samples stored in the NHS, linked with medical information held in people's health records."
23andMe, which is promoting its saliva sample kits around the world, is one of a number of companies claiming to be able to provide the individual customer with continuously evolving genetic research on their predisposition to particular diseases, conditions and traits, as well as details about their ancestry, and the opportunity to participate in an online community of other customers sharing their personal data. There are some important things to note about this:
1. The effect of a gene is determined by its reaction to particular environments. Without sufficient expertise in interpreting it, the data provided by 23andMe cannot be used in any meaningful way to diagnose or prevent disease. This is reflected in 23andMe's Terms of Service which state:
"the genetic information you receive from 23andMe is based on scientific research, and cannot be relied upon at this point for diagnostic purposes. Genetic discoveries that we report have not, for the most part, been clinically validated, and ... the laboratory uses the same technology used by the research community [which] has also not yet been validated for clinical utility";
"our testing service is not licensed by the relevant state and federal authorities for genetic testing conducted for health and disease-related purposes";
and: "YOU EXPRESSLY UNDERSTAND AND AGREE THAT: ... (2) 23ANDME MAKES NO WARRANTY THAT ... (c) THE RESULTS THAT MAY BE OBTAINED FROM THE USE OF THE SERVICE WILL BE ACCURATE OR RELIABLE".
2. As their Terms of Service explain, 23andMe can and will sell your genetic and personal information to third-party companies and organisations:
"Your saliva, once submitted to and analyzed by us, becomes our property. ... By submitting, posting, or displaying the information and/or content, you give 23andMe a perpetual, irrevocable, worldwide, royalty-free, and non-exclusive license to reproduce, adapt, modify, translate, publish, publicly perform, publicly display, and distribute any content which you submit, post, or display on or through the Services.
You agree that this license includes a right for 23andMe to make such content available to other companies, organizations, or individuals with whom 23andMe has relationships, and to use such content in connection with the provision of those services";
"Further, you acknowledge and agree that 23andMe is free to preserve and disclose content to non-profit or commercial partner organizations conducting scientific research, law enforcement agencies, or others if required to do so by law" [or in certain other circumstances]
In other words, by submitting your sample to 23andMe you are volunteering to participate in a massive data-gathering exercise - along the lines of Facebook only far more in-depth - and paying for the privilege of doing so!
Gene-testing is a burgeoning industry. 23andMe already transacts with customers in 50 countries and recently told Bloomberg it plans to expand. It is cultivating a relationship with the US and UK governments. Earlier this year it announced a partnership with Southern California's Palomar Pomerado Health system in which the testing service would be offered at several outpatient healthcare centres, despite the fact that the data it produces is not clinically useful. Clearly something similar is being planned for the UK, where the government is increasingly putting its faith in the public-private model of healthcare.
Perhaps most disturbingly, 23andMe, Illumina (another gene-testing company), Craig Venter (founder of the The Institute for Genomic Research) and others are advocating the genetic sequencing of every new baby. Given their governmental influence it is possible that this will become mandatory at some point. There are obvious ethical concerns with such a proposal. Besides immediate factors like a baby's inability to give consent, the potential for misuse of personal information would be enormous.
The long-term role of genetics in the scientific understanding of human life is undeniable, but it has to be weighed against the many dangers inherent in the construction of a universal database, leading to a world in which, as Prof. George Church puts it: "everybody will be connected to everybody on a huge family tree that looks like Google Maps".
http://www.genewatch.org/article.shtml?als[cid]=563486&als[itemid]=564326
http://www.genewatch.org/sub-396520
KTVU News original video: http://www.youtube.com/watch?v=pVgY4E5fV9Y
Bloomberg interview: http://www.youtube.com/watch?v=k0G9BaKXhQs
Loading...
12:11
Ghost Radar and PX Spirit Talk (side by side 10/30/2010)by lindzbitz12,036 views
and what happens when insurance companies base their fees or even if your eligable for coverage based off of a dna profile?
katemmart 1 week ago
could u please tell me why r u so stupid... thanks
TheAtheistworld 1 year ago
pardon me, but... we ARE genetically related to each other!
azurehalcyon 1 year ago
Rise of the Beast.
superiorgreen 2 years ago
the founder of google married the founder of 23andme.
there are theories for this. youtube 'google master plan'
endSTUPIDcomments 2 years ago
I hear you craftman. this is really scary. Peple are watching everthing but this.
ddsharper 2 years ago