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.
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
Enhancing EU legal frameworks for genomics
The existing EU legal frameworks (e.g., clinical trials and advanced therapy medicinal products, data protection, in vitro diagnostic medical devices, medical devices, and fundamental rights) are relevant for regulating human genomic technologies and should be able to cope with many of the challenges that they pose. However, SIENNA research has identified various gaps and challenges that must be addressed in order to ensure ethical and human rights respectful design, development, deployment, and use of genomic technologies and to further the right to enjoy the benefits of scientific progress and its applications. This brief presents some of the urgent actions required and recommendations for the European Union institutions, and the Member States.
Santa Slokenberga. (2021, January 31). Enhancing EU legal frameworks for genetics & genomics research, SIENNA project Policy Brief #2 (Version 2.0). Zenodo. http://doi.org/10.5281/zenodo.4554977
Ethics & human rights for new and emerging technologies
Human genomics, human enhancement, artificial intelligence and robotics offer benefits for both individuals and society. But these technologies also challenge human rights and our notions of what is ethical. SIENNA has developed frameworks and proposals for the ethical management and legal regulation of human genetics and genomics, technologies for human enhancement, artificial intelligence and robotics.
This policy brief presents key messages drawn from the EU-funded Horizon 2020 SIENNA project (2017-2021). SIENNA seeks to promote enhanced consideration of ethical and human rights issues in new and emerging technologies with major socio-economic impact and human rights relevance.
SIENNA project, Ethics & human rights for new and emerging technologies: SIENNA project Policy Brief #4. (Version 1.0) Zenodo. http://doi.org/10.5281/zenodo.4590094