Public support for greater data sharing with biobanks

Last updated on 18 Jul 2018

Patients would be happy to share personal data alongside tissue that they have donated to biobanks – if they are given a clear explanation of how their data would be used.

These are the findings of a public dialogue commissioned by the Health Research Authority and the HumanTissue Authority (HTA) supported by the Sciencewise programme, run by the Department for Business, Energy and Industrial Strategy (BEIS). The findings showed people expect to be given a clear explanation of what they’re consenting to, and who their data will – and won’t – be shared with.

Biobanks play a crucial role in health research, but some tissue that has been donated goes unused by researchers because it is not adequately linked to patient data.

The public dialogue was run by Ipsos MORI’s Public Dialogue Centre. It aimed to understand more about the public’s awareness of the importance of donated tissue being linked to patient health data, and to learn what reassurances the public may need in order to provide their consent.

The dialogue found many participants assumed greater linking of tissue and data already existed. Once aware that this might not be the case, participants wanted to see how consent could ensure donated tissue wasn’t wasted.

Using the findings of the dialogue, the HRA and HTA are working with key voices in the biobank field to create new guidance on seeking consent to link health data with donated tissue for research, including a template patient information sheet and consent form to future proof consent.

The two organisations are also working on good practice standards for access committees, which control access to tissue and data in tissue banks, and to encourage transparency from tissue banks around research that has been completed.

Commenting in the foreword of the report, Teresa Allen, HRA Interim CEO, and Allan Marriott-Smith, HTA CEO, said:

“It is clear that consent is an evolving area, and the participants were quick to identify this. People’s attitudes to how their personal data is used and shared are changing, and there is a clear challenge around how to future proof consent in an uncertain world.

“What is not uncertain is that the dialogue we had with participants in this research project has identified a need for clarity on the uses of tissue and data, and the requirement to provide a straightforward and accessible consent process. That work falls to us, as the relevant authorities, to address.”

Consent crucial

When it comes to linking data to tissue, consent dictates how much information can be shared, in what circumstances, and for how long. 

The dialogue showed participants understood that consent can be challenging because there is a tension between patients needing to be properly informed but not being given more information than they might easily understand. 

Teresa Allen, HRA Interim CEO, said: “The finding of this dialogue will be of interest far beyond biobanks. If researchers want people’s consent for their projects, they must not underestimate the importance of going beyond the basics. Be clear about your purpose, explain what the potential impact might be, and understand what motivates people to take part.”

The participants also learned about the 100,000 Genomes Project run by Genomics England in partnership with NHS England. Whilst participants had a limited understanding of the science behind the project, they were positive about the work once they’d seen a video explaining the technology and its benefits. This demonstrates the value that engagement to inform consent can add.

Participant felt the consent form for the 100,000 Genomes Project was clear and could serve as an example of good practice for future work on consent. 

Professor Mark Caulfield, Genomics England’s Chief Scientist, said: 

“Our entire project is founded on informed consent from our participants who agree to take part. We have been careful from the outset to ensure that our consent process is comprehensive and rigorous, and includes leaflets and videos that describe what their data will be used for and by whom. We’re pleased with this feedback, and the opportunity this report provides to reflect and further improve our consent model as genomic medicine becomes more embedded in routine NHS care. We look forward to contributing further to this ongoing piece of work with the HRA and the HTA.”

Technical note: Reconvened public dialogue workshops were held in London, Sheffield and Birmingham between 26th September and 21st October 2017. In total 75 participants were involved. They were recruited on-street using quotas for gender, age, socio-economic group and ethnicity, to ensure they were reflective of the UK population.

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