Selling your rights to your DNA… forever

Don’t use the AncestryDNA testing service without actually reading the Ancestry.com Terms of Service and Privacy Policy. According to these legal contracts, you still own your DNA, but so does Ancestry.com.

The family history website Ancestry.com is selling a new DNA testing service called AncestryDNA. But, the DNA and genetic data that Ancestry.com collects may be used against “you or a genetic relative.” The Center for Disease Control and Prevention (CDC) reports that genomics plays a role in nine out of the top ten leading causes of death in the U.S., including cancer, heart disease, stroke, chronic lower respiratory diseases, diabetes, Alzheimer’s, influenza and pneumonia, septicemia, and kidney disease.

According to its privacy policies, Ancestry.com takes ownership of your DNA forever. Your ownership of your DNA, on the other hand, is limited in years. It seems obvious that customers agree to this arrangement, since all of them must “click here to agree” to these terms. But, how many people really read those contacts before clicking to agree? And how many relatives of Ancestry.com customers are also reading?

DNA profile is unique to you, but a substantial portion of your DNA is identical to your relatives. Thus, Ancestry.com is able to take DNA from its customers and also their relatives. Even if you’ve never used Ancestry.com, but one of your genetic relatives has, the company may already own identifiable portions of your DNA.
The personal “Genetic Data” collected by Ancestry.com includes “information derived from processing your DNA Sample through genomic, molecular, and computational analyses using various technologies, such as genotyping and whole or partial genome sequencing. Genetic Data is broader than just the results delivered to you when you use the AncestryDNA test and includes a range of DNA markers such as those associated with your health or other conditions.” In short, Ancestry.com holds genetic data that reveals your health and other conditions.

And your children, parents, brothers, sisters and wider family.  Simply by one person agreeing to sell the rights to their own DNA.

Buried in the Terms of Service, Ancestry.com warns customers, “it is possible that information about you or a genetic relative could be revealed, such as that you or a relative are carriers of a particular disease. That information could be used by insurers to deny you insurance coverage, by law enforcement agencies to identify you or your relatives, and in some places, the data could be used by employers to deny employment.”

This is a massive red flag. The data “you or a genetic relative” give to AncestryDNA could be used against “you or a genetic relative” by employers, insurers, and law enforcement. For example, a young woman named Theresa Morelli applied for individual disability insurance, consented to release of her medical records through the Medical Information Bureau (a credit reporting agency for medical history), and was approved for coverage. One month later, Ms. Morelli’s coverage was cancelled and premiums refunded when the insurer learned her father had Huntington’s disease, a genetic illness.

Apart from the hype, I’m not sure I’m too worried about it

I suppose if they get to a point where they are going to calculate risk factors on behaviour (your DNA says you are 30% more likely to murder someone) then it gets dicey. But to discover you have a genetic disease in your bloodline that you haven’t disclosed or you didn’t know about… it is what it is. There is no free will there.

I put this to a friend who said.  “Wait until they start charging you a license fee for your own DNA”.

I laughed.

Then I realised there are companies that would simply do that.

OK.  Don’t sell your DNA.

 

– Joel Winston, Medium

 


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