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Nicol, Dianne; Gold, Richard --- "Standards for Biobank Access and Intellectual Property" [2012] ELECD 135; in Rimmer, Matthew; McLennan, Alison (eds), "Intellectual Property and Emerging Technologies" (Edward Elgar Publishing, 2012)

Book Title: Intellectual Property and Emerging Technologies

Editor(s): Rimmer, Matthew; McLennan, Alison

Publisher: Edward Elgar Publishing

ISBN (hard cover): 9781849802468

Section: Chapter 5

Section Title: Standards for Biobank Access and Intellectual Property

Author(s): Nicol, Dianne; Gold, Richard

Number of pages: 25

Extract:

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 genome-
wide 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 constitu-
ents. 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 provid-
ing 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
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 Informa-
tion 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 ...