Ethics, Human Rights & Emerging Technologies

The SIENNA project ended on 31 March 2021. The results of our 3,5 year project were presented at a three day conference: Discussing the ethical and human rights issues raised by emerging technologies, methods and instruments proposed by SIENNA. The project is also leaving a legacy of reports and publications in scientific journals, and there are more to come! Some of our results have contributed to the development of a series of policy briefs for European and national policy makers. As the project came to an end, we also participated in the European Parliament's STOA panel's workshop on policy options for the ethical governance of disruptive technologies.

SIENNA Final conference

The video is available for those who are interested in the more general results, and those specific to human genetics and genomics, technologies that can be used to enhance human abilities, artificial intelligence and robotics. We have also provided summaries of our recommendations in a series of policy briefs, and a two minute video version. Results have also been shared in a series of public deliverable reports, and several publications in scientific journals.

The session on human genetics and genomics was held on 10 March 2021. It focused on the value for patients. Here, we presented and discussed the ethical challenges brought by new human genomics technologies and their various uses in diagnosis and therapy. This session includes discussion on the regulatory challenges for human genomics, and possible solutions. We also propose new instruments for ethical guidance and governance of genomic technologies, including a new SIENNA-initiated code of conduct for international data sharing in genomics.

Keynote: What benefits may genomic science provide for patients in the short and medium long time perspective? - some examples

Anna Falk, Associate Professor of Stem Cell Biology, Department of Neuroscience at Karolinska Institutet, Stockholm.

Keynote: What would patients and patient organisations need regarding the regulation of genomic research?

Tamara Hussong Milagre, President of the patient association EVITA - Hereditary and member of ePAG Council at European Reference Network GENTURIS, Lisbon, Portugal

Keynote: Research and human rights from a privacy perspective: in benefit of the patient?

Olga Tzortzatou, Attorney at Law, Biomedical Research Foundation of the Academy of Athens (BRFAA), Greece

Code of Conduct for genomic research

Amal Matar, MD, PhD, Post Doc, Centre for Research Ethics & Bioethics, Uppsala University

Bringing ethics reflection back to researchers

Mats Hansson, Senior Professor of Biomedical Ethics, Centre for Research Ethics and Bioethics at Uppsala University