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  • Article
  • Open Access

Blood, Sweat and Grants 'Honest Jim' and the European database-right

Genomics, Society and Policy20051:1

  • Published:


Access to detailed, up-to-date and available bioinformatics databases has been identified by the Commission of the European Union as a pillar for the harvesting of the potential of life-sciences and biotechnology. Unconditional access to research data, however, is squarely at odds with the primary interest of every scientist to be the first to make a discovery. This classical dilemma is specifically pressing in the data-driven field of biomedical research, where data-quantity has become a quality on its own, where speed matters and patients can't wait. The dilemma urges a consideration of the principle, the practice and the law regarding access for academic researchers to unpublished research data. The consideration will include the presentation of the outcome of a global and a national survey among biomedical researchers on the accessibility of 'their' research data. The principled arguments pro unconditional access and the laws and practical considerations contra unconditional access offer conflicting perspectives and the resulting situation is compounded by the uncertainty created by the European database-right as to who holds legal title to the databases. Therefore, it is explored whether the two opposing concerns - unconditional access vs. legitimate restrictions - can be accommodated by the adoption and implementation of a general policy for access to biomedical data that greases the wheels of (European) research.


  • Supra Note
  • Research Data
  • Funding Body
  • Netherlands Twin Registry
  • Inform Consent Requirement