Direct consumer Genetic tests 23andme the company has failed. This means the fate of his assets – about 15 million users and, according to inference, Their relatives of their blood– Up in the air. Legal experts, including the Chief of the California lawyer in Rob, require consumers to remove information from the site Potential misuse.
“23Andme is a very sensitive number of data, Sara Gerke, the University of Illinois based on the University of Illinois, is highlighted to ensure the genetic privacy of people, whether you live right now, whether you live with your data.”
What does your genetic data protect?
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23And privacy policy It allows data to sell data in the case of failure, but allows customers to delete their accounts, along with the information. However, politics says, however, the company “stores a” information to comply with applicable legal obligations, including the date of birth, sex and genetic information.
“We are committed to our privacy of users and being transparent with our customers how to manage their data,” said the company Open letter to users.
At least 13 states must acquire permission before transferring their genetic data in the event of a purchase Electronic border foundation. And in 19 states, companies must delete user data in their application.
“In the states, nothing will be kicked” to protect users, as Gerke says. “This means returning to the privacy statement.”
What about after?
23And if sold, the buyer initially completed the original privacy policy that limits how customer data can be shared. But it can make changes to politics.
“If individuals are not reading what it is (new privacy policy),” he warned, “they might have just sold their data.”
These changes could be relatively important, Gerke says. For example, 23Andms today says it will not share data with insurance companies. A buyer can update the policy to share sales or data, such as life, long-term care or disability insurance companies, explained. (New owners could not share data with health insurance, however, that which did not call the nondiscrimination law or the law called Gina.
23And if not sold to another company, its assets could be received to redeem the creditor. “The biggest asset they have is all this information,” says Mark Rothstein, a bioethical University of Louisville.
For now, “No change is customer data (if managed or protects 23andms),” according to A The press release announced the bankruptcy.
Large ethical questions
23ARTME data fates can also affect customer-blood relatives. “Not only (your DNA sample) also have information about you, as well as around your nearest relatives,” says Rothstein.
It is a long bioetical question about genetic tests, but “even the problem is even more, this data could not be in the hands we don’t want,” Gerke says.
The relatively small warehouse of genetic data can also be used to explain information about a large swath of the population. A 2018 study The mystery of the Genealogy platform has been found as a data set of 1.28 million people, 60% of the population of the northern European population could be expected to be a third cousin or close match. And about 23.1 million users reported about 15 million around the world.
Law enforcement uses these genetic information to search suspicious suspects. In 2018, the “Gold State Killer” lawsuit identified when Gedmatch Gedmatch used Genetic, found third cousin connections to the DNC of the crime scene, and many similar cases followed. The 2018 researchers determined that only 2% of the population of this population covered that a genetic database that would have a third cousin in this population.
What can we do?
“The USA appears internationally for having no federal law that protects privacy,” Rothstein says. The country’s health privacy protection applies to Health Insurance Portability and Law (HIPAA), health insurance and health care assistants, but not direct to consumers 23adme, as users are named as “consumers” and not as “sick”.
“The scope of the hip is very narrow,” Gerke says, “We were developed at one time when we were thinking about the traditional health systems,” it has not been expanded to the landscape of today’s health-related suppliers and services. He asked the legislators to expand the hipaa or gina or to overcome the new law to protect the privacy of people in the country.
“We will see other cases with large amounts of data in the future,” says Gerke. “We need to start thinking as a society …
