Between 2006 and 2010, UK Biobank collected a wide range of information on more than 500,000 participants aged 40–69 years. The study has been designed to allow scientists to examine the complex interaction of genes, lifestyle and other environmental factors in causing a wide range of different diseases.
UK Biobank’s draft Access Procedures underwent public consultation in July of this year. The procedures are based on the principles of access set out in the UK Biobank Ethics & Governance Framework – a document that details how UK Biobank is managed and which was itself the subject of public consultation before the project began.
UK Biobank, a not-for-profit charity, is intended to facilitate health research over the coming decades to tackle many common illnesses that can cause pain, disability and premature death, typically in middle age.
Key points about access include:
- The resource is open access, although scientists will have to register to use it. There is no preferential access.
- Approved scientists from around the world will be able to use it for health-related research that is in the public good.
- Stringent measures are in place to ensure that participants are not identified.
- After they have published results based on the resource, scientists will be obliged to share them with UK Biobank so that advances can be built on by others.
Scientists whose applications are approved will be charged only for the cost of the provision of the data or samples they require or, more likely, the cost of undertaking the sample analysis and provision of the results.
UK Biobank expects to go live with its online application system in the spring of 2012. Information about the Access Procedures is being made available now to allow scientists the chance to consider how they might make the most of the resource. This could be done by scientists forming consortia, UK Biobank suggests, which would help with planning, but might also make it easier for researchers to gain funding.
When it goes live, UK Biobank will provide detailed, anonymised information collected from participants during recruitment. UK Biobank hopes to add information on deaths, cancers and hospital admissions during 2012, followed in 2013 by data from primary care and from a re-assessment of the baseline measurements in a sub-sample of participants.
Scientists from both the UK and overseas, and from both academia and industry will be able to use UK Biobank. “This is an open access resource, which means if scientists think it can help with their health research, then we would encourage them to apply to use it. If the research is in the public interest, we would expect it to be approved,” said UK Biobank Principal Investigator, Professor Rory Collins.
“Scientists should consider UK Biobank as their resource. The intention is that UK Biobank is used as widely as possible to tackle a range of illnesses that cause pain, disability and death.”
Requests for use of samples or to re-contact participants will undergo a more rigorous review than those seeking data only. Information will be provided in such a way that it does not identify participants.
Professor Collins added: “Use of the resource is an investment in the resource because the results of all analyses will be put back into UK Biobank, bringing benefit to the research of other scientists.”
An Access Sub-Committee of the UK Biobank Board will oversee the process. It will be able to call on ethicists, legal experts, other scientists and the independent UK Biobank Ethics & Governance Council as required.