Over 500,000 individuals are willing to contribute their data to British science, yet it remains unutilized due to concerns about privacy.
I enjoy receiving messages from UK Biobank, which makes me feel productive without much effort. In 2006, along with 500,000 people between the ages of 40 and 69, I joined this remarkable project, which is the most advanced genetic database in the world.
They collected samples of blood, saliva, and urine, assessed bone strength, and recorded details about physical activity, alcohol consumption, and family medical background. They also considered factors such as social status, ethnicity, education level, employment status, and income. My genetic code was analyzed and preserved in ultra-cold freezers (-80C) for future investigations into potential causes and treatments, even after my passing.
As volunteers, we have given permission for our anonymized NHS data to be utilized indefinitely by researchers who have been thoroughly vetted by the guardians of this valuable resource. This data is not up for sale and cannot be used for frivolous or questionable purposes, but rather for the betterment of humanity. I feel a sense of satisfaction (albeit slightly self-satisfied) whenever I am contacted by these researchers.
However, this particular email is different. With the subject line “Request for Assistance from Your GP”, it clarifies that the NHS provides them with regular updates on hospitalizations, cancer diagnoses, and deaths of participants. Unfortunately, they have not been receiving these updates from the majority of GP practices, despite having permission from individuals when they first joined UK Biobank.
I am surprised to learn that UK Biobank does not have automatic access to my records. According to them, they require health data from GPs including diagnoses, referrals, prescriptions, lab test results, and symptoms to be securely transferred. This data, which is de-identified and poses no privacy concerns, remains inaccessible in GP computers. UK Biobank’s chief scientist, Prof Naomi Allen, states that this is a significant loss of information on conditions such as dementia, Parkinson’s, depression, and diabetes that are treated by GPs.
A letter from UK Biobank, the Royal College of GPs and NHS England has urged GPs to share data. The letter acknowledges that GPs are busy, but emphasizes that the simple task of clicking one button to hand over records of UK Biobank registrants takes less than a minute. However, despite our hopes, only 20% of UK Biobank volunteers have had their GP information collected.
General practitioners (GPs) are primarily self-employed healthcare providers, which was a regrettable oversight by Aneurin Bevan when establishing the National Health Service (NHS). (Wes Streeting hopes to encourage them to become salaried NHS employees voluntarily.) It appears that GPs cannot be compelled to comply: legally, they are data controllers, although Welsh and Scottish laws allow for the use of their medical records. In a recent trial to assess their willingness to share data, UK Biobank was only able to convince 20% of English GPs to press the designated button. The remaining 80% either ignored the request, were unaware of UK Biobank, were not swayed by a monetary incentive, or were concerned about potential liability for violating data privacy laws, despite the information commissioner’s assertion that it is permissible due to our consent.
During the pandemic, there was a brief period where an emergency measure required GPs to provide information about Covid. This information was crucial in tracking the disease, identifying at-risk individuals, and testing treatments like dexamethasone, which has potentially saved 1 million lives globally. However, this temporary order has expired and the data is no longer accessible for researching potential cures for long-term Covid symptoms. It is now necessary to reinstate this order.
The UK Biobank letter was not signed by the British Medical Association due to lack of consultation with the BMA IT committee. Their response was neither a confirmation nor a rejection, but rather a “not yet”. The concern is that signatories from 2006 may have changed their stance, but this is also true for wills, lasting power of attorney, and other signatures made years ago.
There is growing concern over the potential misuse of NHS data, especially with news that the leading candidate for the £480m contract for an NHS federated data platform (FDP) is Palantir. This company, which has ties to US defense and has been linked to US surveillance, is owned by Peter Thiel who supports anti-abortion candidates and has previously backed Donald Trump. Thiel has also expressed his desire to completely overhaul the NHS. Despite NHS England’s assurance that the contract only involves providing software and does not allow access to data, there is still public mistrust due to past attempts by the Conservative party to privatize and sell data. However, it is clear that the NHS is in dire need of this FDP to connect its fragmented systems, as noted in a letter signed by numerous doctors.
This means that you will no longer have to repeat your medical history at every NHS appointment. The small chance of records being misused must be weighed against the significant benefit it brings to treatment. The success of this system relies on the public’s trust, however, the mere mention of Palantir instills fear, and trust in this tainted government is non-existent.
It would be a tragedy if the straightforward process of GPs sharing our information with UK Biobank became entangled in the matter of awarding a contract to a different operator. To alleviate any unnecessary concerns, the commendable organization UseMYdata, created by individuals with cancer, encourages individuals to contribute their information for research while also closely examining privacy protections. The UK’s robust biosciences field heavily relies on NHS data, which is not the case in other countries. However, with Brexit and the departure of the EU medicines agency, life sciences are experiencing a loss of crucial clinical trials as companies move elsewhere. Building trust in research among the public is crucial.
I reached out to my GP practice, which is known for their exceptional service, requesting that they provide my data to UK Biobank. The administrator responded, stating that they did not receive the letter requesting this information. It’s possible that the practice is overwhelmed with requests and experiencing exhaustion. Regardless, it would be beneficial for the BMA to also urge GPs to share our data with UK Biobank in order to support their research efforts both nationally and globally.
Polly Toynbee is a Guardian columnist