The project ‘Ethical and Legal Aspects of Whole Genome Sequencing’ (EURAT) began at the Marsilius Kolleg, Heidelberg University in March 2011 and is now funded by the German Cancer Research Center (DKFZ). Scholars from the University, the Heidelberg University Hospital, the DKFZ, the European Molecular Biology Laboratory (EMBL), the Max Planck Institute for Comparative Public Law and International Law and the Center for Health Economics Research Hannover (CHERH) at Hannover University have come together to address the normative – ethical and legal – issues as well as the economic aspects of whole genome sequencing. Their goal is to create in Heidelberg, already a centre of genome and tumour research, a platform for the discussion of the normative dimensions of genetic research.
Ethical and Legal Aspects of Whole Genome Sequencing (EURAT)
EURAT has the following three objectives:
- to formulate policies that can be applied to the political policy discussions and the legislative procedure in Germany as well as to the international discussion on standards and regulations
- to stimulate and contribute to informed public discussion of the opportunities and risks of this research
- 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 products of EURAT are the
- EURAT Position Paper “Eckpunkte für eine Heidelberger Praxis der Ganzgenomsequenzierung“ which has first been published in 2013 and updated in 2015 as well as scholarly work from EURAT members. [Cornerstones for the Heidelberg practice of whole-genome sequencing]
- Project EURAT “Ethical and Legal Aspects of Whole Human Genome Sequencing”, Position Paper, 2016: Cornerstones for an ethically and legally informed practice of Whole Genome Sequencing: Code of Conduct and Patient Consent Models, 2nd, updated edition.
- Project EURAT “Ethical and Legal Aspects of Whole Human Genome Sequencing”, Position Paper, 2019: On the Release of Raw Genomic Data to Patients and Study Participants.