Standards for biobank access and intellectual property

The Human Genome Project (HGP) and follow-on collaborative studies have provided scientists with a vast amount of information about the human genome. Despite this, and despite an increasing focus on genomewide analysis, there are still significant gaps in our understanding of how the human organism functions as a whole and how life choices and environmental factors interact with our pre-programmed genetic constituents. These are important questions, for which answers are vital if we want to create a healthier world for future generations. Biobanks are widely recognized as vital research tools in this quest. They contribute by providing collections of human tissue linked with genetic information and other health information that permit researchers to pinpoint disease targets and perfect drug development. There is a wide diversity in types and forms of biobank, ranging from small-scale disease-specific collections through to more recently established large-scale population resources.