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DATA REPOSITORIES · Technical details seen as easy compared to issues involving privacy, property, finances


January 15, 2005 | In the past two years, a number of ambitious biobank programs have launched in the United Kingdom, Sweden, Canada, and Japan. While the scientific objectives vary, the general goal is to gather medical and genetic data from hundreds of thousands of individuals. To be successful, the biobanks must ensure that the information they collect gets maximum use by others, in the hopes of unlocking the genetic basis of diseases.

Sharing all that data is a key challenge. While technology might be able to quickly resolve this issue (by adopting an appropriate database strategy, for example), there is no simple solution. "We need vast [repositories] to understand the underlying cause of disease," said Brett Davis, marketing manager for information-based medicine at IBM Healthcare and Life Sciences. "But most of the hurdles for sharing [information] are not technical."

For instance, there are philosophical issues about which data formats to use, where each scientific discipline has something to say about the choice. There are also issues about intellectual property, money (who reaps benefits derived from the information), privacy, and law.

Data Deposits
Long the purview of national research labs or international consortia, new biobanking initiatives are taking aim at a variety of diseases.

Biobank Objectives
U.K. Biobank, Manchester Enlist up to half a million participants to better understand diseases such as diabetes, cancer, and heart disease.
Karolinska Institutet Biobank, Stockholm Examine thousands of human tissue samples, and genetic and environmental data to accelerate understanding of diseases.
iCapture Centre, Vancouver, B.C. Examine genetic susceptibility of cardiovascular and respiratory disease patients to environmental influences.
"You can't de-couple these issues from the technical issues," Davis said. To that end, IBM recently hosted the second annual Biobank Summit*, which brought together researchers, organizations, and legal experts from around the world to discuss the practical issues of creating shared repositories of biological samples and genomic data for use in accelerating cures for diseases.

No Tyranny of Standards 
One consensus from the summit participants was that there is no desire to force a common standard for data formats on everyone. "The goal is to foster harmonization, not force standardization," said Bartha Knoppers, founder of the Public Population Project in Genomics, a group that facilitates international collaboration aimed at improving public health. "Even with all the technology available today, [we] have to learn how to share."

In order for these fledgling biobanking efforts to share information, a host of legal, financial, and intellectual property issues must be addressed from the beginning.

Take the issue of patient privacy requirements during blood sample collection. Typically, patients sign informed consent to allow the genetic data to be used for research. But the definition of consent and the required safeguards for patient privacy vary internationally.

"How does patient consent to use genomic data in one country transfer to another country with tougher privacy laws?" asked one summit participant. There is no simple answer. However, most speakers felt that these legal issues, while not trivial, could be worked out in most cases.

"Many patients don't worry about privacy, but [instead] where their next treatment will come from," said Kathy Giusti, president and founder of the Multiple Myeloma Research Foundation and Multiple Myeloma Research Consortium.

"Privacy is certainly perceived as a big issue," said Michael Milken, the former junk bond dealer who is now chairman of the research organization FasterCures. However, he said, if people were given the proper incentive, such as knowing they are helping to cure a disease that has affected someone in their family, "they would donate their information."

Milken likened today's biobanking projects to high-speed trains, which are often limited by the track infrastructure. "The challenge is that science is moving faster than the infrastructure," he said.

If obstacles to sharing information could be removed, there is potential for great scientific gains. With the new biobanking initiatives, "[we're] not talking about a [single] large collection, but a network of distributed resources," said Anna Barker, deputy director for advanced technologies and strategic partnerships at the National Cancer Institute. "In theory, once all these data get into a database, [you] can do more biology in silico."

* Worldwide Biobank Summit II: Collaborating for Cures, Tarrytown, N.Y.; Nov. 15-17. 

For reprints and/or copyright permission, please contact Angela Parsons, 781.972.5467.