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New ICO guidance on research and data protection - have your say

The ICO is currently consulting on updates to its guidance on the Research, Archiving and Statistics (RAS) provisions, following the Data (Use and Access) Act 2025. The consultation closes on 27 April 2026.

The RAS provisions are directly relevant to life sciences and healthcare organisations, providing important flexibilities for the use of personal data in scientific research. The ICO is inviting views on the revised criteria for scientific research and its position on the new disproportionate effort exemption to the requirement to inform data subjects of secondary use of personal data for research purposes.

Our data protection team has been reviewing the draft guidance and has identified a number of areas where greater clarity would be welcome - including around the definition of scientific research, consent frameworks, pseudonymisation, and real-world evidence studies.

We are submitting a formal response to the ICO and would be happy to include your views. If you would like to share any comments or discuss further, please get in touch with us by Tuesday 21 April.

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