One of the most popular DNA testing companies called 23andMe just signed a $300 deal with a pharmaceutical giant GlaxoSmithKline, and what many feared came true. There is a grey area with who 23andMe can give the customer’s DNA to and what that second party will do with it. What’s worse, once in the system, deleting the genetic information or destroying the sample may be close to impossible.
DNA Testing Companies’ Popularity
There are many reasons why DNA testing companies like 23andMe and Ancestry.com gained popularity. The companies promise the customers to show them where in the world their roots came from and by what percentage. Some good has come from it as some people could find their long lost relatives and family members they did not know existed.
The DNA test can also explain which diseases a person is more susceptible to—genetically speaking. Of course, any of us can still develop an illness without a genetic predisposition but because of environmental and lifestyle factors.
The huge downfall to signing up for this test—spit test to be exact—is that 23andMe can and often does sell customers’ information to drug makers.
23andMe Makes Many Deals With Drug Companies
GlaxoSmithKline is not the only drug giant to make deals with 23andMe. Pfizer and Lundbeck are already working with them. Moreover, 23andMe is getting into the drug making world themselves. They even hired a former Genentech executive, Richard Scheller, to lead their development team, and the company is going to develop their own drugs using the customers’ information.
What You Need To Know About 23andMe
The new $300 million deal with GlaxoSmithKline is said to be used to research new pharmaceuticals. The collaboration will last for four years and research Parkinson’s disease.
Can this be a good thing? Regardless of your stance on pharmaceuticals versus natural ways of treatment, most people do not read the small print and have no idea what they are signing up for using 23andMe. Even knowing that the company and its partners will use the genetic information, there is no way to tell exactly how—because of the agreement that they have most customers accept (about 80% willingly opt-in to share their private health information).
Leaks of information do happen. Privacy advocates warn the consumers that incidents of leaked private information happen all the time, often without the customer ever knowing where their private information ended up. It is not any different with the DNA information.
Deleting your DNA information once in the system is tricky if at all possible. 23andMe asks every customer if they would like their spit test discarded or stored after the test is done, however, they do not ask about the raw genetic data they collect. What happens with this data is unclear. To at least make sure that your spit test is thrown out, you need to go to the Customer Care page on their site and find the “Requesting Account Closure” option.
If your DNA test was done by Ancestry.com, you will have to call them to request the spit to be discarded. To delete your test results, you can go to their website, your account settings, and choose “Delete Test Results.” It is questionable, however, if this deletes your private information just from the account you can access or the company’s server.
A lesser known genetics testing company Helix will throw out your spit if requested, but they will keep your DNA information forever, according to their policies.
Any company working with 23andMe can access and use your information.
Taken from the 23andMe consent agreement:
“By choosing to have 23andMe store either your saliva sample or DNA extracted from your saliva , you are consenting to having 23andMe and its contractors access and analyze your stored sample, using the same or more advanced technologies.”
23andMe can hang on to your information for up to 10 years. Unless they decide otherwise.
Instead of worrying about your private information, it is best to consider pro versus cons of these DNA testing companies before signing up for the spit test.
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