EURAT - Ethical and Legal Aspects of Total Genome Sequencing

In 2007, sequencing the genome of a single individual was possible for the first time. This opened up a wide array of new possibilities for the diagnosis and treatment of diseases. But these possibilities were accompanied by new problems and questions: Are the “classical” models of patient autonomy and “informed consent” still viable? How can the privacy and confidentiality of patient information be ensured in a field in which large international research networks and huge tissue banks and databases prevail? How distinct is the difference between “healthy” and “sick” for people that carry a predisposition to a certain disease that has not broken out yet? How can discrimination on the basis of genetics be effectively avoided? What new costs are incurred through new diagnosis techniques and how can these costs be evaluated in terms of expected benefits?

Scholars from the fields of bioinformatics, human genetics, molecular biology, oncology, pathology, law and theology have come together in the project “Ethical and Legal Aspects of Total Genome Sequencing” (EURAT) to address possible opportunities and problems. These scholars come from Heidelberg University, the Heidelberg University Hospital, the German Cancer Research Center (DKFZ), the European Molecular Biology Laboratory (EMBL) and the Max Planck Institute (MPI) for Comparative Public Law and International Law.

EURAT pursues the following three objectives:

1. to formulate a position statement that can be applied to the political policy discussions and the legislative procedure in Germany as well as to the international discussion on the definition of standards and regulations
2. to stimulate and contribute to informed public discussion of the opportunities and risks of this research
3. to establish a nationally and internationally visible platform in Heidelberg for the continuous and interdisciplinary work by relevant fields on normative questions raised by this research

Work on the project began in March 2011. Further information on EURAT can be found at the following website. http://www.uni-heidelberg.de/totalsequenzierung/english.