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MPs must act now to protect health data

Friday, November 17, 2023

Everyone deserves power and control over their personal information. National AIDS Trust are calling on MPs to act now to protect the rights of people living with HIV to choose how, when and to whom they talk about their status.

The most common form of discrimination that people who contact our Discrimination Advice and Support Service report is their HIV status being shared without their consent. This happens in employment, in healthcare services, by the police and by people within one’s personal life. For some of the people who’ve reached out to us, the sharing of their HIV status has resulted in harassment, bullying, isolation and even violence.

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.

We are calling on MPs to support amendments to the Bill which can add further protections to people living with HIV from having their HIV status shared without their consent. We are extremely concerned that in its current form, the Bill will inadvertently allow discrimination to continue.

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.

Adam Freedman, Senior Policy and Campaigns Officer at National AIDS Trust said:

“Despite existing equalities and data protection legislation, far too many people are having their private health data shared unlawfully.

“The Data Protection and Digital Information Bill is a real opportunity to make sure that people living with HIV and everyone else are protected from having their health data shared without their consent. Without the right to control if, and when, their HIV status is shared, people living with HIV are being put at risk of harm.

“We call on all MPs and Peers to support our amendments, and to make sure that the Bill safeguards everyone’s health data, including all those living with HIV.”

Join us today by asking your MP to support our amendments to protect everyone’s health data.

NAT Topic