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Politicians must act now to protect people's health data

5 min read

Every aspect of our lives today produces data, and some of the most personal data relates to our health.

At National AIDS Trust, we strongly believe that everybody should have the right to control how their health data is shared, so that people can have confidence that information that is highly personal to them is never shared when it shouldn’t be.

When health data is shared without consent, it can cause tremendous distress, and can even put people at risk of horrendous treatment. We are calling on MPs and Peers to support amendments to the Data Protection and Digital Information Bill to add further protections to everyone’s health data, including for people living with HIV.

In the UK, the Data Protection Act 2018 sets out the standards for how personal data should be handled by organisations. However, when it comes to individuals’ HIV status, many of the accepted principles of data protection are often thrown out the window.

We run a Discrimination Advice and Support service for people living with HIV. The most common form of discrimination experienced by people accessing our service is when their HIV status is shared with others without their consent.

We see this in the workplace, healthcare services, by the police and by people within one’s personal life. Quite often, these breaches of confidentiality occur in the mistaken belief it is necessary to share a person's HIV status to safeguard their health or to prevent HIV transmission to others.

Such good intentions are at best misguided and at worst can be dangerous.  We know from the cases we receive that sharing someone’s HIV status can lead to harassment, isolation, bullying and even violence. On the other hand, some disclosures are simply malicious and are wholly driven by HIV stigma, and totally unfounded fears about people living with HIV.

We have worked with people who have had their HIV status shared around their workplace and have then been harassed by their colleagues as a result, making their work lives untenable. This happens time and time again despite the very robust existing equalities and data protection legislation in the UK.

We have also dealt with allegations made against police forces in how they have handled information related to HIV status both on their computer systems, and in the conduct of individual officers. For example, we were made aware of allegations that police officers had shared an individual’s HIV status in the wider community they lived in after accessing this information. Regardless of why a person is in police custody, police officers must not record and share personal health information unnecessarily and inadvertently fan the flames of HIV prejudice.

Similarly, we believe that the Data Protection and Digital Information Bill needs to account for the dangerous effects that sharing an individual’s HIV status internationally could have, particularly in a different country’s context where HIV and other linked prejudices could put someone at high risk of violence or extreme harassment towards an individual. We need to be confident that the data protection regime of any country data is appropriately secure before any transfer of data happens.

National AIDS Trust’s position is clear – people living with HIV should have the right to determine when, or even if, their HIV status is shared in these or almost any other circumstance. We believe that this principle should apply to everyone’s health data – whether they are living with HIV or not.

There is a real opportunity available to us to make sure that people living with HIV and everyone else are protected from having their health data shared without their consent. The Data Protection and Digital Information (No. 2) Bill was introduced in the House of Commons in March 2023 and aims to create rules for how personal information about people can be used. However, we are extremely concerned that in its current form, the Bill will inadvertently allow discrimination to continue. Without the right to control if, and when, their HIV status is shared, people living with HIV are being put at risk of harm.

Working with MPs and Peers, we are aiming to table amendments to this Bill which add further protections to everyone’s health data, including for people living with HIV. These include:

Additional wording to clarify that employee’s personal data cannot be shared in the workplace by anyone who is not authorised to do so.

Removing a clause which allows the police to access individuals’ personal data without justification.

Amending wording to annually review data protection policies of other countries who may receive personal data for any purpose, rather than the current text that says this only must happen on an “ongoing” basis. This should ensure that individuals' personal data shared overseas, such as HIV status, is secure and will not be shared inappropriately, which could put them at risk of harm in some countries.

Require the Secretary of State to consult the views of the independent regulator, the ICO, when assessing the suitability of countries who receive personal data, such as HIV status.

We believe that these amendments are vital to ensure that everyone’s health data is protected in employment, when handled by the police and when transferred internationally.

We call on all MPs and Peers to support these amendments, and to make sure that the Data Protection and Digital Information Bill safeguards everyone’s health data, including all those living with HIV.

To get involved in National AIDS Trust’s Parliamentary campaign or to learn more, please contact adam.freedman@nat.org.uk.

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