Abstract: To help overcome the bottlenecks that limit the development of diagnostic and therapeutic products, academic and industrial researchers, patient organizations and charities, and regulatory and funding institutions should redefine the basis for sharing the knowledge collected in large-scale clinical and experimental studies.
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[W]e should look again at how knowledge can be shared between all the stakeholders, redefining the frontier between what can be the subject matter of valuable intellectual property rights and what is the basic knowledge that should be made freely available to all.
This is not a new issue. It was hotly debated at the beginning of the Human Genome Project (HGP), and for its entire duration in relation to competition between the public and private sectors. I suggested early on that the nucleic acid sequences collected on a genome scale should be considered as elements of description insufficient to warrant property rights by themselves in the absence of a genuine invention and should thus be placed in the public domain . A similar attitude was taken by the participants of the HGP in 1996, as expressed in the 'Bermuda rules', with the result that the openly accessible reference human genome sequence is now the common basis for current research. These proposals contributed to the 'Universal declaration on the human genome and human rights' adopted by the United Nations and its Educational, Scientific and Cultural Organization (UNESCO) in 1997-1998....
The recent advent and rapid development of new generations of very-high-throughput DNA sequencing methods makes it now possible to foresee that in the next few years the sequencing and assembly of thousands of human genomes (and transcriptomes) will be achievable at a cost of $1,000 each or less, which is a projected decrease of almost a million-fold in less than ten years....
Public electronic repositories for these large-scale datasets, together with standards and open access publications for their description, have been important developments in the past decade for ensuring that they become available for further studies. However, despite requirements by prominent journals and funding agencies for submission of primary data as a condition for publication and financial support, recent surveys indicate variable compliance with these rules in both academia and industry. There is clearly room for significant improvements in this area if researchers are to take the best advantage of the large datasets produced....
All stakeholders should work together to identify topics and areas in which joint actions would improve the situation significantly in the short term.
I would like to suggest that one such topic is the status and availability of large amounts of underexploited experimental and clinical data in public and private laboratories....
Posted by
Peter Suber at 3/13/2009 12:36:00 PM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.
I recommend the OA tracking project (OATP) as the best way to stay on top of new OA developments. You can read the OATP feed on a blog-like web page or subscribe to it by RSS, email, or Twitter. You can also help build the feed by tagging new developments you encounter.
