SIENNA D2.7: Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics

This SIENNA report 2.7 provides an assessment and integration of key results from SIENNA Reports 2.2, 2,3, 2.4, 2.5 and 2.6. A basic learning from these reports is that one has to acknowledge a need to balance different interests against each other, i.e. important human rights for the protection of basic freedoms against human rights related to the potential of benefiting from scientific advances. The report emphasize that ethics must be an integral reflective part of the conduct of science as well as of clinical practice. A principled approach for such a reflective work is suggested to be part of a framework for ethical assessment both of genomic technologies at large and for research in genetics and genomics. The framework proposes a set of nine ethical principles and questions for ethical self- assessment in genetic and genomics research. For emerging technologies in human genetics and genomics where there is yet not sufficient backing in basic science or animal experiments but a possibility for clinical application within a context of compassionate treatment a special governance structure is suggested with an international organization setting up an institute of a Patient Ombudsman.

*This report is based partly on the SIENNA results reported in 2.2 2.3, 2.4, 2.5 and 2.6, thus with due acknowledgement to contributors to these reports