The New Biology
- Queen Mary Studies in Intellectual Property series
Edited by Matthew Rimmer and Alison McLennan
JOBNAME: Rimmer PAGE: 3 SESS: 5 OUTPUT: Thu Dec 22 13:16:36 2011 5. Standards for biobank access and intellectual property Dianne Nicol and Richard Gold 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.1 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.2 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.3 1 2 3 Organisation for Economic Co-operation and Development (OECD) (2006), Creation and Governance of Human Genetic Research Databases, Paris: OECD Publishing, 35, http://www.oecd.org/document/50/0,3343,en_2649_34537_ 37646258_1_1_1_1,00.html (‘OECD Creation and Governance Report’). See also National Health and Medical Research Council (2010), Biobanks Information Paper 2010, Canberra: Commonwealth of Australia, http://www. nhmrc.gov.au/your_health/egenetics/practitioners/practitioners.htm (‘NHMRC Biobanks Information Paper’); and Organisation for Economic Co-operation and Development (OECD) (2009), Guidelines on Human...
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