Read our full investigation about PolygenX

Access to UK Biobank

Two separate companies have access to the UK Biobank. One is a scientific racism organisation, another is Heliospect, whose founder created PolygenX, a screening service that predicts the IQ of embryos made during IVF.

18 Oct. 2024

Biobanks are collections of genomic, health and personal data used for medical research. The UK Biobank is one of the largest of its kind. It started in 2006 and contains the information of 500,000 volunteers. In addition to providing genomic data, participants go through a range of tests, measuring weight, height, BMI, blood pressure, lung capacity, and bone density. They also provide extensive biographical data and do a short IQ test.

When volunteers to the UK Biobank fill out its consent form, they are told their data will be used “to support a diverse range of research intended to improve the prevention, diagnosis and treatment of illness, and the promotion of health throughout society”. Volunteers relinquish their rights to bodily samples and give permission for their health records to be stored.

This enormous repository of information has assisted medical research into diseases like cancer.

Researchers can apply for access, and are typically given part of the dataset on the condition that they adhere to ethical standards, ensuring that the privacy and confidentiality of participants are maintained.

Our investigation found that the two separate companies have access to the UK Biobank. One is called Human Diversity Foundation (HDF), a scientific racism company, and another is Heliospect, whose founder created PolygenX, a polygenic screening service that predicts the IQ of embryos made during IVF.

The HDF’s Matthew Frost told our undercover reporter in October 2023 that his company’s scientific racism research team had got hold of a biobank data set. “They’ve managed to get access to the UK Biobank,” he said. “You’re not meant to have that.”

A month later, HDF’s founder Emil Kirkegaard, the Danish scientific racist, discussed biobank access with his underground research team.

“I believe someone has downloaded the UK Biobank. Who was that?” asked Kirkegaard.

“So yes, it’s me who’s got the UK Biobank downloaded,” replied a British writer known as Simon Wright, a colleague of Kirkegaard on several papers. “I’ve already got the data downloaded, I’m already working with the IQ stuff.”

Wright referred to a column of data in his set marked “EID”, indicating a unique, 7-digit number assigned to the volunteers who give data to the UK Biobank.

The scientific racists at HDF are eager to source datasets of genetic information in order to seek evidence of meaningful, measurable differences in intelligence between races.

Kirkegaard, in a separate conversation with an undercover reporter, described the challenges of accessing data for his research. “The only way we get these datasets is when some academic gets them and gives them to us under the table,” he said, adding that “academics, sometimes private sector” individuals provide him with the information he wants.

A representative from the UK Biobank told us it is investigating HDF’s access to its data.

In a separate case, PolygenX has used biobank data to make its polygenic screening service. There is no suggestion its access to the UK Biobank is linked to HDF’s.

PolygenX’s CEO Michael Christensen told our undercover reporter in November 2023 that the UK Biobank “give access to everyone, even Chinese companies get raw data access”.

Jonathan Anomaly, a PolygenX colleague, likewise told our infiltrator in October 2023: “The UK Biobank is a godsend, that’s basically the best thing that's ever happened for this field.”

Heliospect Genomics, a company also run by Michael Christensen, was granted UK Biobank access in June 2023. A statement from the UK Biobank said it had gained access in the approved manner for pre-implantation screening in the US. “This is entirely consistent with our access conditions,” said a representative.

HOPE not hate wishes to raise ethical concerns about the UK Biobank. Polygenic embryo screening is not legal in the UK, but is in the US. The use of British genetic data in a country where regulations are laxer, we argue, raises questions about the kind of projects the UK Biobank approves, and to whom it gives sensitive information.