The HRA's Collaboration and Development Manager, Will Navaie, describes how the HRA is looking at ways of breaking down barriers to researchers using biobank resources in the UK.
"When the government announced a £20 million investment in UK
Biobank last year, it claimed that the UK could be “a world leader in 21st
century life science”.
That link between biobanking and health research feels well placed. Biobanks play a crucial role in facilitating valuable research, providing access to crucial tissue, blood samples, DNA and data that help scientists improve our understanding of health and disease.
At the HRA, we’re working to make sure the route for researchers to access that information is as straightforward as possible.
And it’s with that in mind that we’re looking to extend the regulatory endorsement we offer biobanks across England, as well as working with the Devolved Administrations across the UK.
The situation today
At the moment, biobanks can come to the HRA to get ‘generic’ ethical approval. The Research Ethics Committees look at aspects of governance like consent, handling and future access to the samples. Researchers looking to use those biobanks can be provided with an assurance that the biobank is run ethically, but are not offered clarity around how the banks comply with the law, or other aspects of good practice. That’s what we want to change.
What we’re looking at
We want to look at the potential benefits of extending the approval we give biobanks to include legal compliance and good practice checks. Biobanks and the organisations that host them will have assurance that the projects using tissue and data will be in line with the UK policy framework. And everyone would benefit from clarity in what level or approval is required for different types of research, something that we appreciate isn’t as clear as it could be when researchers are relying on biobanks.
How we’re doing that
There are two aspects we’re looking at. To consider how we’d gauge legal compliance, we’re working with the Human Tissue Authority and our own Confidentiality Advisory Group (which is helping us with data protection aspects). Meanwhile we want to speak to the biobanking community to get a better feel for what good practice we should consider. We already work closely with UKCRC - it’s a condition of ethical approval that biobanks are registered with them, for instance (a link with the sector that is unique among equivalent regulators around the world) – and we’re also looking to work with industry to consider what barriers they face to using biobanks.
What happens next?
Our next step is to speak to people involved with biobanks to get their views. I was at the UK Biobanking Showcase, where the HRA’s Catherine Blewett and Amanda Hunn were speaking, and it was helpful to hear the views from biobanks there. If you’re part of a biobank then we’d really like to hear from you: drop an email to my colleague Wai.
The UK has been leading the way in biobanking in recent years. Helping the UK retain its position as one of the best places in the world to do high quality research is an important part of the HRA’s remit, and we think our work in this area, with your help, can really contribute to that."