All your genes are belong to us
Thanks to advances in chromosomal technology, science types are unlocking many of the mysteries of our genetic makeup. In fact, some companies are even offering to test your genes and let you know if you have any problems. It’s almost as easy as taking your car to the shop for a diagnostic!
The companies offer consumers the ability to peer into their own genomes to trace ancestry and assess their future risk for diseases such as cancer, and multiple sclerosis. Consumers place their orders on the Web, then get a kit in the mail and return it with a cheek swab or spit sample for analysis.
Run a swab down the inside of your cheek. Send it to the lab. Find out you’ll be getting Alzheimer’s in 40 years. So nice. So easy.
Because the field is so new, there’s not a whole lotta regulation in place. The most famous of the commercial gene-testing bunch is 23andMe — it has the monetary backing of Google and its co-founder Anne Wojcicki is married to Google co-founder Sergey Brin. So much money, power, and brains in one couple, it’s a little scary.
Finding out what the future holds in store for you is great for customers. (I guess.) But 23andMe getting to compile a vast database of genetic material from its customers is a wee bit disturbing.
A few companies, like 23andMe, also are also using the tests to compile a vast database of genetic information of data that could be worth millions of dollars to outside researchers. Current projects sponsored by 23andMe include studies on a broad range of traits and behaviors, such as ancestral origins, pigmentation, optimism and handedness.
I love science. I love advances in science. So I like the what could be accomplished with this database.
Genetic data you share with others could be used against your interests. You should be careful about sharing your genetic information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, the protection it will provide against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established. In addition, GINA does not cover life or disability insurance providers. Some, but not all, states and other jurisdictions have laws that protect individuals from this kind of conduct. (For some examples of protective legislation and a description of the Genetic Information Nondiscrimination Act, click here.)
Genetic information that you choose to share with your doctor may become part of your medical record and through that route be accessible to health care providers and insurance companies in the future. Genetic information that you share with family, friends or employers may be used against your interests. Even if you share genetic information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned genetic information about health conditions and you do not disclose this to them, this may be considered to be fraud.
Yeah, that could kinda suck.
What disturbs me even more than the privacy implications is the company stockpiling samples of genetic material from paying customers. Those kits cost $399 a pop (though they’re on “special discount” at $99 through the end of September). Those genes belong to us! 23andMe warns in its Consent Form, which you must sign off on before participating:
23andMe may enter into partnerships with other investigators and organizations—non-profit and/or commercial—that conduct scientific research.
If companies are going to stockpile and sell the data, it seems like those who have paid to participate should get a cut of the profits. Or there should be two options: a $399-keep-my-info-out-of-your-study option and a free-use-my-results-however-you-want option.
But maybe a socialistic tendency just runs in my genes.
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