Human genetics & genomics

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 a 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





Project structure


Disclaimer: This website and its contents reflects only SIENNA's view. The Commission is not responsible for any use that may be made of the information it contains.