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How could proposed changes to data protection laws affect research?

by Phil Prime | Analysis

8 December 2021

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The Government has set out proposals to reform data protection laws, now that the UK has left the European Union. Here we discuss Cancer Research UK’s key concerns about the proposals and what they could mean for research.

As a research funder and an advocate for cancer patients, Cancer Research UK has a strong interest in ensuring that research can progress unhindered. It is increasingly clear that this means ensuring that researchers have timely and secure access to high quality data about patients and the public, which we know is an invaluable resource for research.

Researchers can face significant challenges accessing this data, for a variety of reasons, and so we strongly support efforts to improve access for researchers and other organisations working to the benefit of patients.

However, it is essential that such improvements are carried out with careful consideration of the wider context, such as the impact on public trust and other unintended consequences.

For this reason, teams across CRUK are paying close attention to the Government’s proposed reforms to data protection laws, which were published for consultation in September.

Although this ambition is welcome, we do not believe that there is a strong case for many of the legislative changes proposed. In many cases we believe that the barriers identified would be better addressed through improved, coordinated cross-sector guidance on critical issues for researchers.

We are also concerned they would have a negative impact on research by affecting the UK’s data adequacy agreement with the EU, damaging public trust and creating unnecessary confusion.

CRUK is working with other research charities and organisations to highlight the potential risks of the proposals to the Government, including by responding directly to the consultation.

Risk to data transfers with the European Union

In June 2021, the European Commission approved a data adequacy agreement between the European Union and the UK. This agreement allows personal data to flow freely between the UK and the EU. It is essential for many medical and cancer research collaborations – as an example, 32% of CRUK clinical trials involve an EU member state.

Because the decision is in part based on how well aligned the UK’s data protection laws are with those in the EU, any significant divergence puts the agreement at risk. Without it, alternative transfer mechanisms would be needed to allow personal data to be shared, creating added complexity and legal costs for research studies.

We have recommended that the Government does not make any changes to legislation that would risk the status of this vital data sharing agreement.

Risks to public trust

Public trust is essential for any improvements in data collection, use and sharing to be achieved, and it is vital that any organisation working with personal data – including researchers – seeks to build and maintain public trust.  As controversies surrounding data use by organisations from Facebook to the NHS have demonstrated, public trust is hard-won and easily lost.

Data protection laws are a fundamental part of protecting public rights and we are concerned that making changes to these would negatively impact public trust, including in research and researchers.

We have urged that the Government considers the impact any changes would have on public trust before making them, and ensures any changes are communicated transparently.

Risks of further confusion

It is also important to emphasise that the medical research sector has been working with existing legislation for three years, and a range of guidance has been developed by regulatory and other bodies. Making changes now risks creating unnecessary confusion. This is especially true in situations where a lack of confidence or knowledge among data users or custodians already poses a barrier to access and use.

We have recommended that the Government seeks to address the barriers through improved guidance and training.

Our full response is published on our website and includes detail of our views on the proposals that centre on research and innovation, as well as those that affect the more operational aspects of our work as a charity. The consultation closed for responses on 19 November, and the Government will now collate the responses before publishing the outcome.

CRUK’s policy team, along with many others in the organisation, will be closely following developments and proactively engaging with Government and others to make sure the medical research sector’s voice is heard.

Rebecca Hill is a Policy Advisor at Cancer Research UK