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The details of 500,000 volunteers of UK health information database Biobank have been hacked and put up for sale on a Chinese website. 😮

(13 Posts)
FriedGreenTomatoes2 Thu 23-Apr-26 12:46:20

I’ve been a volunteer for 4 years.
I find this concerning, in the news just now.

Anyone else?

FriedGreenTomatoes2 Thu 23-Apr-26 12:49:08

“The data were found being offered for sale on three separate listings on the Chinese e-commerce site Alibaba.

Its understood the Biobank, which is independently run from government, had “extremely lax” security arrangements.“

Luckygirl3 Thu 23-Apr-26 12:55:35

What is it?

Maremia Thu 23-Apr-26 12:56:46

So disappointing. It was a valuable resource and has been used in many legitimate medical research projects.

Grammaretto Thu 23-Apr-26 13:19:42

I'm one of them. I've been a guinea pig since the start. About 2O years.
I've had every kind of scan and test and answered trillions of questions.
It says no names and addresses have been disclosed.
Do I believe that? I want to.

twaddle Thu 23-Apr-26 13:30:07

FriedGreenTomatoes2

“The data were found being offered for sale on three separate listings on the Chinese e-commerce site Alibaba.

Its understood the Biobank, which is independently run from government, had “extremely lax” security arrangements.“

Where does it claim that Biobank has extremely lax security arrangements?

twaddle Thu 23-Apr-26 13:34:39

Grammaretto

I'm one of them. I've been a guinea pig since the start. About 2O years.
I've had every kind of scan and test and answered trillions of questions.
It says no names and addresses have been disclosed.
Do I believe that? I want to.

You should believe it. Data is de-identified ie all personal details are removed. The only way you could possibly be identified is if you have a very rare condition and are the only person who fits a number of descriptors.

It's inaccurate to say the date was "hacked". It wasn't. It was sold by one (or more) of the institutions which bought it for legitimate research purposes. It won't be data about the whole person, but about a group of people with a specific condition eg diabetes or high blood pressure. When research institutions buy the date, they only buy a limited number of datasets.

twaddle Thu 23-Apr-26 13:38:13

Luckygirl3

What is it?

It's a huge collection of medical data, which is sold to legitimate research companies. The data is "crunched" in databases. When you read information such as x% of people with diabetes have gum disease (or whatever), the chances are that the data has come from Biobank.

AmberGran Thu 23-Apr-26 14:01:40

The data is supposed to be stored without identifiers, so it should not expose any personal data. The Chinese may well have bought it to include in their health data banks. They do all the same health studies that are done in the Wet, after all.

Anyone who has shopped online probably had their personal data (names, addresses, phone numbers, email addresses, card details, etc) sold on (or harvested) years ago.

Georgesgran Thu 23-Apr-26 15:17:42

Best look it up Luckygirl13 to understand it more. It’s a long explanation, but interesting.

twaddle Thu 23-Apr-26 15:25:50

AmberGran, The data is stored without identifiers. Yes, the source is an institution which has purchased the data legitimately. The Chinese actually do a lot of medical research, from which other countries benefit enormously. They also have their own databanks which are available to researchers in the west. Given that China has such a huge population, their data is particularly valuable.

No hacking has taken place and I'm still waiting to know how Biobank's security arrangements were "lax". It seems the source of this is Tice stirring the pot (what a surprise!)

M0nica Thu 23-Apr-26 15:36:24

The information did not include names, addresses or contact details.

That is the main thing that most people need to realise.

We have both been members since the scheme was set up c 2005-10 At an institutional level, I am angered because they always told us the system was so secure.

Otherwise lets hope the data becomes accessible to someone who can add to all the useful research that accredited scientists have already done. www.ukbiobank.ac.uk/research-stories/

Maremia Thu 23-Apr-26 16:14:07

So, has it been hacked, or was it a legitimate purchase?