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 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