Legal and ethical
ACGT's aim is to develop a European Knowledge Grid infrastructure offering methods and systems for ameliorated medical knowledge discovery. This can only be done through a complex integration of biomedical data and information which includes not only the modelling, visualization, data mining and grid technology of clinical information relating to tissues, organs or personal health-related information, but also information at molecular and cellular levels. By collecting, storing, sharing, analyzing and collating all these cellular and intracellular data particularly from cohorts of cancer patients we enter into a bundle of Intellectual Property Rights (IPRs). Whereas data protection has been in the focus of ACGT from the very beginning, IPR-issues will become a second focal point of legal research in the second half of the project.
IPRs have always been considered as one of the most important legal tools to protect and recoup the investment of authors, researchers, institutions and investors, allowing them to acquire a limited monopoly of their ideas and creations.
With the proliferation of genetic databases such as the ACGT Grid infrastructure, a correlating need for means of protecting the value linked with these sorts of data has dramatically risen.
The access to data and the ability to extract and re-utilize the data will play an important part in ACGT's scientific investigation and exploitation. As always in intellectual property law it is a question of achieving a balance between a sufficient incentive and adequate protection of investment to encourage the creation and use of information.
The study will be drawn up in different parts. To start with, the international and European legislation regarding this cluster of IPRs will be briefly described. Following, particular emphasis will be added in the law of patents, copyrights and the sui generis right for databases. Finally, it will close by providing guidance as to which measures should be taken for the Intellectual Property protection in ACGT. Special emphasis will be given to the best possible equilibrium between the interests of patients giving their data and/or body material for ACGT and the researchers producing results out of these data/materials within the project.
Marcelo Corrales