Biology and IT join to create biobanks

Researchers aim to set up global databases of biospecimens to help in the fight against cancer

James Watson in New York

Advances in supercomputing, and technology that allows scientists to analyse humane genomes on a single chip, are creating the first great gold rush of the 21st century: biobanking.

Across the world, researchers are racing to build repositories of biospecimens - including tissue samples, fluids such as blood, serum and urine, and molecular derivatives such as DNA, RNA and proteins - which they believe will accelerate progress in beating cancer, heart disease and other medical challenges.

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Dr Anna Barker, deputy director for advanced technologies and strategic partnerships at the US National Cancer Institute (NCI), told the 2004 worldwide Biobank Summit, hosted by IBM, that the industry is about to embark on great change.

'We are at an inflection point, at the convergence of technology and science, which is very rich in terms of what is going to happen. Cancer is leading a lot of what we're talking about, and the NCI's challenge is to eliminate the suffering and death due to cancer by 2015,' she says.

'Biospecimens are key to molecular medicine and accelerating progress in this battle. They are a critical resource for 21st century medicine that will be worth their weight in platinum.

'Once we have enough data, you could really start doing this "in silico", so a biobank is just a resource to create a database to help get us closer to personalised medicine.'

Dr Carolyn Compton, pathologist-in-chief at McGill University Health Centre, says the creation of large-scale resources of biological information that researchers can access for testing will reshape drug discovery.

'These specimens are needed to test models for beating cancer that have been tested on a mouse or on cells, in order to verify whether or not it will work in a human environment. That's the real test of a possible drug,' she says.

'The absence of large numbers of high-quality, clinically-annotated tissue samples, supported by a common informatics platform, is a major bottleneck for cancer research today. We're not looking at individual genes in one lab, we're working in big teams to review all genes, everywhere.'

But the fledgling industry is beset by problems of standardisation, with little in the way of guidelines or regulation, which is accentuated by privacy concerns.

'As in IT, standards are a major issue in the field of biobanking. Right now, there are no standards for collecting tissue samples and writing clinical annotations of the samples,' says Dr Compton.

'There's also no standard for patient consent in the use of the tissues and their privacy, and currently biobanks lack the ability to share their existing content with others across the globe.'

Unless these issues are resolved, the industry risks creating silos of crucial information that can't be shared across organisations, regions or countries, which could impact on the industry's goals for battling cancer.

'Unless substantial action is taken with biobanking and biospecimens, we'll delay personalised medicine by 30 to 40 years,' warns Dr Barker.

'The promise is enormous, but for this to occur, we'll need substantial, cataclysmic change.'

One of the organisations trying to address these issues is the UK Biobank, which aims to identify the genetic and environmental factors affecting the health of a large group of volunteers, moving toward an improved understanding of treatment and avoidance.

The organisation will collect tissue samples from 500,000 people, representative of the UK population, in the 45 to 69 year age range, which would make it the biggest biospecimen resource of its kind in the world.

The UK Biobank's goals are ambitious: only officially formed in April, it plans to begin full recruitment of volunteers by September, following nine months of trials starting next month.

'The trick is to build an IT architecture that will work for the next 30 years,' says chief information officer Stephen Walker.

'We've got a lot to do, but we've also got a lot of opportunities to get it right.'

Walker's challenges are just beginning.

'The risks we face, given the value of the information we store, are immense. It's my job to make sure my wife, dad and others would be happy to sign up to the project,' he says.

Over the past six months, Biobank UK has created an ethics and governance framework, developed a range of protocols for handling tissue samples, and is now working with IBM to figure out a technology architecture.

Walker's first goal is the ability to collect, transport and store clinical data.

'Once we've done that, we'll have a biobank. Everything else can follow in the future: the analysis, the data warehousing and so on,' he says.

The vision is extremely promising, but getting there will be a significant undertaking.

Open sourcing the biotech industry

The rush to create biobanks puts the biotech industry in danger of repeating a failing of the IT industry: the inability to share data across disparate platforms.

The possibility of giving medical researchers and clinicians across the globe access to a vast repository of critically important tissue samples is in the industry's grasp, but will require the creation of standards from the start.

Michael Milken, the one-time Wall Street giant and now chairman of US-based think tank FasterCures, says biobanks should help accelerate the creation of drugs by taking away some of the risk and providing access to data, giving drug companies an incentive to enter new areas.

The underlying aim is ambitious: to 'open source' the millions of high-quality tissue samples collected from a diverse group of citizens, with and without cancer, across the world.

'Data is crucial in almost every industry,' says Milken.

'People use the data that is provided, and the better the data quality, the more people will pay to use it. We need to do the same with biological data, so that they can become national assets.'

To achieve this, he is working to create a biorepository portal, which would give anyone in the world access to tissue samples from a range of biobanks - much like the human genome that is publicly available across the web.

'Imagine if a student had an idea that she believed could cure some kind of cancer, and she had access this data to test the idea and see if it could work. Biobanking could help provide this.'

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Further reading

IBM signed up for Biobank database

Vendor to provide technology for medical project

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