Experts warn DNA testing kits could put your genetic information in the wrong hands
MADISON, Wis. — Genome testing is becoming more and more popular, but experts warn there are some privacy concerns to think about before you send off your DNA.
Companies such as Ancestry and 23andMe use a sample of saliva to tell you your genetic makeup, family history and predisposition to diseases.
University of Wisconsin biochemistry professor Michael Cox worries in the future, “that information can be used to deny access to health insurance, to life insurance, even to employment. So how it’s used and who has access to it is a real concern.”
Cox said the worry is that laws could change to give law enforcement agencies or other companies access to your genetic information through DNA testing databases.
Currently, there are anti-discrimination laws that protect you by limiting what your health insurer or employer can learn about your DNA, but those laws don’t apply to life insurance, disability or long-term care insurance companies.
“If you’ve had genetic testing that might have implications for your health, they can ask you about that, and you are legally obligated to provide it to them or if you don’t provide and you knew it that can forge your insurance later on,” said UW law and bioethics professor Pilar Ossorio.
A spokesperson for 23andMe said customers would need to agree to new terms.
“They’re always looking for more and more ways to make money. If they find that they could monetize the specimens or the actual genetic information that they have been developing, they might want to do that,” she warned.
Ossorio worries if a company goes bankrupt or is sold, its dispersed assets could include your genetic information.
“If we go bankrupt, the controlling party of the company would have to honor agreements we have in place with our customers since those are legally binding,” said a 23andMe spokesperson.
“A lot of people are still trying to find different kinds of value in (genetic information) and so we don’t know how they might want to use it in the future,” said Ossorio.
Police are already trying to use the databases to compare to DNA found at crime scenes.
A recent 23andMe transparency report shows law enforcement has made 5 requests to the company for an individual’s genetic information, but the company has not turned over any information.
In 2016, Ancestry turned over information to law enforcement in 8 of 9 requests.
Some fear this could be the start of a new trend.
Ossorio points out that in 2005, police confirmed the BTK killer was their suspect by subpoenaing his daughter’s DNA from a hospital.
“Whatever I disclose to the world about my genetic information, I’m disclosing something about my siblings, my parents, even my cousins. People can use that information and have,” she said.
Cox said the enormous potential of these companies can’t be realized until the potential for abuse is addressed.
“Those things need to be considered at the highest levels,” said Cox.
He believes lawmakers need to catch up to science.
“Protecting our customers’ privacy is our highest priority, and that starts with the basic belief that customers should always maintain ownership and control over their own data,” said Melissa Garrett, an Ancestry communications spokesperson said in a statement.
Garrett said Ancestry “does not sell DNA to insurers, employers, health providers or third-party marketers and will only share DNA data with researchers if the customer has consented. Customers can request that their data and accounts be deleted at any time.”
23andMe made a similar statement.
“We do not sell individual customer information nor do we include any customer data in our research program without an individual’s voluntary and informed consent, which is a separate document beyond our terms of service and not required when signing up for 23andMe,” said Andy Kill, a 23andMe spokesperson.
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