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Lending Libraries for Research

Networks for sharing tissue and data across institutions and continents could be invaluable. But we’re not there yet.

By Courtney Humphries // Spring 2013
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While some medical institutions and government agencies build large, centralized biobanks of tissue and data, other groups are looking to pool their resources and collaborate on research studies. To succeed, however, they must meet daunting logistical challenges. For example, when the National Cancer Institute (NCI) launched The Cancer Genome Atlas (TCGA) project in 2005, the goal was to sequence large numbers of tumors to gain a molecular understanding of cancer, and biobanks in the U.S. promised hundreds of tumor samples. Yet only a small percentage of the frozen tissue samples that arrived at the TCGA processing laboratory were of sufficient size and quality for the project’s needs. Much of the problem, says Jim Vaught, chief of NCI’s Biorepositories and Biospecimen Research Branch, stemmed from variations in how labs process and store samples.

Although there are best practice guidelines for collecting, storing and sharing tissues and fluids, Vaught says there’s no guarantee that institutions will follow the protocols, which can be especially crucial for tissue banks that rely on freezing or chemical fixatives to preserve complex organ or tumor samples.

Now, an NCI initiative—the cancer Human Biobank, or caHUB—is researching ways to improve the availability of high-quality specimens. “Biospecimen quality is at the heart of developing diagnostic tools and treatments for personalized medicine,” Vaught says, noting evidence that variations in biobanking processes have hindered research seeking reliable “biomarkers” that could give early warnings about the presence of disease. “If you don’t consider the quality from the start, you end up mistaking artifacts for biomarkers.”

Beyond these technical hurdles, biobanking networks must also navigate issues of ownership of data and intellectual property. Different approaches for recruiting research subjects as well as consent and privacy standards are also challenging. Such problems stand in the way, at least for now, of building a resource that most researchers would love to have—a global biobank network.

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Issues of privacy and consent are scarcely slowing the race to build enormous, invaluable “biobanks” of human tissue and data.

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Universities, health organizations and government groups are amassing huge biobanks to help scientists probe the origins and development of human disease.

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