The diversity of biobanks, collections of human specimens from a variety of sources, raises questions about the best way to manage and govern them, finds a study published in BioMed Central’s open access journal Genome Medicine. The research highlights difficulties in standardizing these collections and how to make these samples available for research.
Biobanks have been around for decades, storing hundreds of millions of human specimens. But there has been a dramatic increase in the number of biobanks in the last ten years, since the human genome sequencing project. Because there is no central registry of biobanks in the US, researchers from the University of North Carolina at Chapel Hill invited over 600 biobanks to participate in an online survey.
The study finds great diversity in when and why these biobanks were created, how they are organized, who pays for them, and what specimens they store. Over half were set up to facilitate research into a particular disease, mainly cancer, but others were created as a ‘home’ for older sample collections. The number of samples within each biobank is hugely variable, from tens to millions, and can include clinical, pediatric or post-mortem samples, or specimens from research, with origins as varied as blood and solid tissues, or hair and toe nails.
Talking about attempts to put into place policies to regulate biobanks, Prof Gail Henderson, who led this project explained, “Biobanks are part of an emerging and rapidly evolving industry, with an increasingly central role in biomedical research. Because they have developed in different contexts with different goals and funding sources, any attempt to control or standardize biobanks will need to take into account their organizational diversity and their individual practices and challenges. It is unlikely that a one-size policy will fit all.”
Characterizing biobank organizations in the U.S.: results from a national survey Gail E Henderson, R Jean Cadigan, Teresa P Edwards, Ian Conlon, Anders G Nelson, James P Evans, Arlene M Davis, Catherine Zimmer and Bryan J Weiner Genome Medicine (in press)