As happens6:06Dozens of US states
If you have ever sent a saliva sample to 23 Andme, your genetic information could be sold soon.
The company based in California, which allowed customers to learn about their ancestry by sending saliva samples by mail, declared bankruptcy in March. As part of that process, the DNA profiles of more than 15 million people are auctioning, including about 700,000 Canadians.
A new demand filed on Monday in the United States seeks to stop that sale. But if it fails, privacy defenders say that Canadians have all the reasons to worry that their most personal, unique and immutable identification information can be sold without their consent.
“It is literally active for the company,” said Aileen Editha, a doctorate candidate at the University of Queen’s who studies the property rights of human genetic materials. “If my data were there … I would personally worry.”
27 US states
23Andme has repeatedly said that any company that bought your data will have to comply with the law, as well as any privacy agreement that customers agreed when registered. At the last minute of Friday, he said he plans to sell his assets to the company’s former CEO.
William Tong, Connecticut attorney general, finds no reassuring.
He, together with representatives of other 26 US states and the Columbia district, are demanding in a lawsuit filed on Monday in the bankruptcy court that seeks to block the sale of personal genetic data in 23Andme without the client’s consent.
“We are fighting the tooth and the nail to protect consumers,” Tong told As happens Host Kӧksal.
“Entrepreneurs, particularly in the technology industry and the Biotechnology Health and Industry, must understand that they have to take care of the personal information they obtain from consumers.”
In a statement sent by email to CBC, 23Andme said the lawsuit is “without merit.”
“The sale is allowed under the privacy policies of 23 Andme and the applicable law. We require that any bidder adopt our policies and comply with the applicable law as a condition to participate in our sales process,” said 23andme.
The suspended Canadian class action. But you can still file a claim
On Friday night, 23Andme announced that the winning bidder for his assets is Tam Research Institute, a California company led by the 23 -Andme co -founder, Anne Wojcicki.
Wojcicki resigned as CEO when the company declared bankruptcy.
23Andme had previously selected the biotechnology firm Regeneron Pharmaceutical as the main offer, but then reopened the bidding process, allowing Wojcicki to seal the agreement with an American offer of $ 305 million.
The sale must still be approved in the courts before it is official.
Tong said Wojcicki presided over the company in 2023, when a massive violation of the company saw computer pirates access the private consumer information of almost seven million customers.
“You have a bidder that represents the original founder who ruined things first, and did not do enough to protect people whose information was delivered to 23andme,” Tong said.
Approximately 15 million customers who used the genetic test company are urged to take measures to eliminate their personal data and protect their privacy. Cybersecurity experts say that DNA data could be sold as part of a restructuring or sale after the company requested bankruptcy protection.
That data violation led to the law firm Knd Litigio complex to launch a collective claim against 23Andme in the name of the affected Canadians.
But the lawsuit stopped when 23 Andme declared in bankruptcy of Chapter 11, says KND lawyer, Sage Nematollahi.
As is, says Nematollahi, any Canadian who wishes to pursue a claim against the company must Present it as an individual through the Missouri bankruptcy court.
Nematollahi says that his law firm is struggling in the BC courts to continue acting as a representative of all Canadian customers of 23andme in the courts of the United States.
“It is really not very practical for each Canadian client to go to some website for the insolvency procedure of the United States, which is full of legalas and such things, and tries to follow their own individual claims,” he said.
Eliminate, delete, delete
So what resources have Canadian clients, in addition to navigating the American bankruptcy courts and waiting for US demands to develop?
Editha of the University of Queen says that Canada has several laws that protect genetic data, but is not sure they are robust enough to meet the needs of a complex case like this.
“The difficult part is when it comes to a multinational company, because so many different actors and interests come into play,” he said.
“The only way to avoid it is for people to withdraw their data and request 23 to delete their information from the database.”
It is a advice that Tong, as well as several other privacy experts, have echoed CBC.
Some clients have already consented to use their information for research purposes when they were registered for 23Andme, Editha said. That means that your information can have already been sold to third parties, such as pharmaceutical companies.
“There is nothing to go back to that point,” he said. “But what my application can do is prevent my information in this sale in the future.”
Editha says that companies often trust the fact that many people lack time, capacity or legal literacy to completely understand what rights are signing when they register for a service.
“They really announce how the ‘Oh, look at all these fun things that we can provide your DNA if you send it to us.’ But then … the small print is not spreading properly visible,” he said.
“That is what really should happen is to make sure that people have the power to make decisions and make decisions based on informed consent.”
With Reuters and Associated Press files. Interview with William Tong produced by Cassie Argao
