Data key to medical future

The UK is pushing on with plans to create biobanks of genetic and lifestyle data for future cures to today's diseases

Work to create online repositories of both lifestyle and genetic data is gathering pace in the UK.

Researchers believe that the information will play a crucial role in advancing medical research and act as an enabler for more personalised medicine.

The UK Biobank, a local charity that intends to create a database to track, over the next three decades, the health of 500,000 participants aged between 40 and 69, was first discussed some five years ago, but is now making strides towards reality.

After successfully completing initial trials, the organisation will start collecting information from participants in earnest early next year.

A separate biobank project, onCore UK, was announced at IBM's third Biobank Summit in Stockholm last month. It will provide a tissue resource for research into new interventions for cancer.

Dr Brian Clark, chief executive at onCore UK, envisages building a type of online resource, where both academic and commercial medical researchers can search for genetic data supplemented with lifestyle information.

'I'm aiming for the IT functionality of an Expedia-meets-Amazon-style online resource, where researchers can go online and browse available samples, order samples, or see availability and request key types of tissues and so on,' he said.

'It may be quite visionary, but we need to be creative in our thinking.'

The databases are not unique to the UK; there are projects under way across Europe, the US and Japan, among others.

In all these regions, researchers are racing to build repositories of biospecimens - including tissue samples from fluids such as blood, urine and serum - which they believe will accelerate progress in beating illnesses such as cancer and heart disease.

The key to these resources is complementing this genetic data with a detailed understanding of each person's lifestyle and medical history.

'The importance of previous events in our life is key to understanding how diseases may develop,' said Professor Jan Carlstedt-Duke, dean of research at Sweden's medical university Karolinska Institutet.

'We know some of the links between genetics and the environment - what we eat and drink and so on - but others we can't link so easily. Biobanks can create a broad bank of knowledge providing information that can be used on a long-term basis,' he said.

'The more we focus on complex diseases and lifestyle diseases, the more important it is to collect related data to help our understanding. This is the essence of biobanking.'

The aim of all these projects is not necessarily to deliver a breakthrough in the next year or two, but to establish a foundation for better and broader medical research in the decades ahead.

'We are planting a tree today, so that we can stand in its shade in the future,' said Mylene Deschenes, an executive director at the Public Population Project in Genomics consortium (P3G), a group that promotes collaboration between researchers in this field.

Speaking at the biobanking summit, Ajay Royyuru, a director at IBM's Computational Biology Centre, said the convergence of biology and IT is making such projects possible today. 'All this was not possible 10 years ago,' he said.

Clark agrees: 'It's a timely convergence of biology and technology, and we can't afford to miss the opportunity,' he said.

But just as IT has become one of the key underlying factors helping to make such projects become reality, it also represents one of the major challenges.

Michael Svinte, IBM's vice president for information-based medicine, says dealing with enormous volumes of extremely sensitive data is a major issue.

'One of the key challenges is around IT, in terms of the integration and management of the data that accompanies the biospecimens being collected,' he said.

But for developers of these resources, the primary complaint is the difficulty in finding people with the right mixture of technological and biological skills to develop the computing systems required for such a venture.

'I have found it very difficult to find IT people who can really grasp the magnitude of what we do,' said Steve Walker, chief information officer at the UK Biobank.

As a result, Walker is using a combination of in-house staff and a specialist consulting firm on a 12-month contract.

'It was becoming too slow trying to find the right people to put on the books,' he said. At onCore, Clark is now trying to recruit specialist IT staff who can begin to design and build the scalable systems required to cope with an unspecified number of patient records in the future.

'I am now trying to recruit my head of informatics and IT as the first permanent position in this organisation,' he said.

'I'm going for a computer specialist who has an understanding of biology, rather than a biologist with an understanding of technology.

'Because it is this collision of two disciplines, actually finding individuals who span both is enormously difficult.'

Of course, the job offers one sideline benefit that few others can match: the successful candidate may well become part of a team that eventually helps to find a cure for cancer.