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Post by Lone Wanderer on Jan 11, 2019 9:06:14 GMT
Source:
Ownership of this DNA has been source of controversy, for Ancestry and other companies. Last year, privacy lawyer Joel Winston wrote an article, re-posted on ThinkProgress, which criticized Ancestry’s terms and conditions, arguing they give the company a free license to exploit people’s DNA for the rest of time.
“Customers must understand that turning over their DNA means a loss of complete ownership and control,” Winston wrote. “Ancestry.com customers should also know they’re giving up the genetic privacy of themselves and their relatives.”
Ancestry reacted strongly to the article, with Heath, the company’s chief privacy officer, calling it “inflammatory and inaccurate.” Soon after, Ancestry updated its terms and conditions, clarifying its does not “claim ownership rights in the DNA that is submitted for testing.” The company, he added, needs to obtain a licence from customers to provide the product they purchased.
Winston, based in Pittsburgh, said he was surprised at the company’s strong pushback, but asserts the upshot is still the same.
“Ancestry’s terms and conditions are long, and somewhat boring, but people should read them,” he said. “They make a big deal of stating that you own your DNA. But they are taking a worldwide, perpetual, royalty-free license to do what they want with your DNA and your actual genetic sample that they keep in storage.”
Ancestry allows customers to request their DNA analysis be erased from the company’s database after results are received, and also request destruction of their remaining biological sample. But it is a two-step process, and customers must read deep into the company’s privacy statement to learn how to do it. Requests for DNA data elimination can be made online, but the company asks customers to call its support center to request destruction of their biological sample.
“They don’t make it easy,” said Pitts, of Center for Medicine in the Public Interest. “One thing they could do right now is have a button right next to the “I accept” button that says please destroy my genetic information after obtaining results. That would be a very robust statement and the step in the right direction.”
Jennifer Lynch, a lawyer with the Electronic Frontier Foundation, another watchdog group, said a major concern with Ancestry and other DNA testing companies is whether their policies will change over time, with new ownership and management. Future owners could change privacy protections, she said, including Ancestry’s promise not to share personal data with insurance companies.
Ancestry officials insist that will never happen, for business and other reasons. But the company’s terms and conditions, in boilerplate language, make clear that the company’s policies could change in the future. The company says customers will be contacted about any changes, and then will have the option of canceling their accounts. But if they don’t notice or don’t opt out, any changes will become effective 30 days after notification.
“We have the right to modify these Terms or any additional terms that apply to a Service at any time,” the company says.
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Post by Elizabeth on Jan 11, 2019 19:05:00 GMT
Yeah, this thing worries me. Why don't they provide privacy for our DNA? Technically not doing so is bad customer service and less customers as the result. Are they setting themselves up for failure?
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