Tuesday, March 25, 2008

Genome Unleashed

An expert on confidentiality and security of health information, co-author of HIPAA of 1996 and a former co-Editor of "Information Security" Journal I am compelled to sound off.

For "only" $1,000. web-based startup “23andMe” offers a person an “unguided” tour of geneology offering predictions of its genetic future as well as its ancestral past. Similarly, "Navigenics" will match your genes to current medical research calculating your risk for a number of diseases.

“23andMe” was funded personally by the co-founder of Google, Sergei Brin (later repaid by Google!?) who's also married to the co-founder of 23andMe Anne Wojcicki.

Google's investment in the company is driven by its desire to obtain, control, and sell valuable information without owners’ knowledge and/or consent.

Given that the vast majority of patients are unable to comprehend the results and will have to rely on the very same companies to “translate” them, most physicians are currently untrained for genomic medicine and are ill equiped to assist patients wielding printouts indicating “variations” in a particular gene possibly leading to successful claims of medical malpractice.

Issues of genomic information ownership and release create new fertile ground for litigation.
Who owns the genomic test results? Is it the patient, testing lab, Google, patient employer, insurance company, lending institution, state and/or federal government?

Fortunately for the genomic industry, Food & Drug Administration which strictly regulates diagnostic testing for diseases, has been “slow to respond” to business practices of these companies and its consequences!

An individual can finally make a quick life-changing decision (even deadly one) based on the results of a genetic test. Armed with individuals genomic information employers can deny employment and/or promotion'; insurance companies can and will deny coverage; banks will deny loans under the justification of unreasonable business risk?

We are Making a Difference (MAD), you decide.


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