‘Reopened those wounds’: IVF patients to sue clinic over data breach
A Sydney couple is desperately trying to have their $14,000 embryos removed from an IVF clinic after their confidential data was leaked to the dark web.
A young Sydney couple say they have been “forced” into making the heartbreaking decision to remove their embryos from storage after their medical information was leaked by one of Australia’s leading IVF clinics.
Dozens of patients have filed a class action lawsuit against Genea after a major data breach earlier this year, which resulted in sensitive and personal information being published on the dark web.
Genea refuse to say how many patients were hit by the February leak with patients still being notified this week that their data was published.
Mark Thompson and his wife Tara are two of the patients eager to sue Genea over the breach after Tara’s diagnosis and treatment history were published to the dark web.
The couple have told Genea they want to remove their embryos from storage due to further privacy fears - robbing them of their hopes of expanding their family.
He said the cycle to create the embryos cost the couple about $14,000.
Speaking to news.com.au, Mr Thompson said they made the difficult decision after months of silence from Genea since the data breach.
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He said that since informing Genea of their decision, they have been met with silence - with the company continuing to take out the monthly fee for the storage.
“I’ve told them directly that I’ll be taking my eggs out of storage and waiting on some sort of acknowledgment of that just that statement, and I’ve still got nothing,” Mr Thompson said.
“How can you, in a situation like this, continue to charge for this egg storage, but you’re not telling me anything about this data breach.”
The Thompsons are the latest heartbreaking story to come out of the Genea data breach.
Sydney woman Aleks James told news.com.au she spent about $250,000 with Genea over the course of a decade, with all of her cycles unsuccessful.
In July, she was sent an email telling her that her data have been leaked - before receiving another email last week, detailing that even more of her details had been published to the dark web.
“We had closed that chapter of our lives...all my pregnancies were unsuccessful and now it’s reopened those wounds,” she said.
“You’re just saying to me that my whole information has been sold on the black market somewhere and there is no explanation on how?”
In June, one man who had donated sperm to his close friends through Genea spoke to SBS News about having his data posted on the dark web.
“It was supposed to be a good deed. It’s almost like you’re being punished because your information was held on a computer system,” he told SBS News.
”I don’t know what the next step is, but having some information about what the f**k is happening is probably a good bloody step.”
Aussie journalist Alex Bruce-Smith also wrote about her data being leaked after deciding to freeze her eggs with Genea.
“My reasons were boring (in my early 30s and single) and the results were decent,” she wrote in Pedestrian.
“Every single thing I spoke to a doctor about while freezing my eggs is now available for someone else to read. My medications, my fertility concerns, my hopes for the future. I’m a fairly open person, and even that makes me squirm.”
Class action
Singleton father Matthew Maher is one of the affected patients who is leading the charge for a class action lawsuit against Genea.
Mr Maher has been in touch with both Slater and Gordan and Maurice Blackburn, who said they are looking into the matter.
“I have told [Genea] if there is a class action or a claim of compensation, I’ll be the first to sign up,” he said.
A spokesman for Genea told news.com.au the company would still not be revealing how many patients have been affected by the breach.
“We deeply regret that personal information was accessed and published and sincerely apologise for any concern this incident may have caused,” the spokesman said.
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Originally published as ‘Reopened those wounds’: IVF patients to sue clinic over data breach
