Policy-makers all over the world struggle to assess the ethical and human rights impact of new research in genetics and genomics, human enhancement, artificial intelligence and robotics. Researchers from four continents have teamed up in the SIENNA project to help improve existing ethical and legal frameworks. The project has received a financial contribution of just under €4 million from the EU’s Horizon 2020 programme, and Trilateral Research is deputy co-ordinator of the project.
Today, we are closer to scenarios we could only have pictured in science fiction a few decades ago. It is difficult to predict the consequences of developing and using new technologies.
We interact with robots, smart devices, intelligent software, prosthetics and implants in daily life. At the same time, new and improved technologies for genetic and genomic research are making their way from research to patients and consumers in the form of cheaper and more accessible tests and screening. At least in theory, this new research could be further developed to ‘design’ or modify specific genetic traits in humans.
Who is accountable for the different uses that we make of new powerful research and technology? What kind of regulations should be in place and what concerns should they address?
The SIENNA project sets the ground for ethical codes and recommendations to improve existing legal frameworks and will help to ensure that future applications are designed in accordance with responsible safeguards, bringing together researchers from Europe, Asia, Africa and America.
The project also raises challenging philosophical questions. Where do we draw the line between health and illness? Cosmetic surgery for a burn victim is different from the same procedure for someone suffering from mild social distress. One is a treatment, one is considered an enhancement. What do we expect from intelligent software in terms of morality? Are we willing to give up privacy to have our genome screened for genetic disorders, or our personal liberty to interact with machines?
“The SIENNA project will examine the practical and ethical questions of what can and should be permitted in research and technological development. Our proposals will be based on ethical assessments that build on extensive consultations with international stakeholders and leading experts in genomics, human enhancement, AI & robotics. Together with surveys of public opinion and citizen panels, this will ensure outcomes that are relevant, well-supported and more likely to be implemented”, says Rowena Rodrigues, Senior Research Analyst at Trilateral Research and deputy coordinator of SIENNA.
Trilateral Research leads the following work in the project:
- theoretical and methodological fundamentals
- stakeholder analysis
- analysis of legal and human rights requirements (human-machine interactions)
- societal acceptance and awareness (human-machine interactions)
- development of a code of responsible conduct for researchers in human-machine interaction
- obtaining buy-in for the codes from EU and international institutions
- development of a methodology to reconcile needs of researchers and the legitimate concerns of citizens
- sustainability planning
- scientific dissemination
- data management
- ethical monitoring
In recent years, there have been numerous academic publications on the ethical and human rights issues of new and emerging technologies in genomics, enhancement and robotics. Both the public and policy makers are concerned about these issues. SIENNA takes a new and extended approach by looking at these areas together.
“SIENNA is the first project to undertake an extensive, international study of present and future ethical and human rights implications of genomics, enhancement and robotics, and how people feel about their use. We are also one of the first projects to work closely with organisations in science, industry and policy to refine policies and ethics codes for better development and use of the innovations from these fields”, says Philip Brey, Professor of Philosophy of Technology, University of Twente, and coordinator of SIENNA.
Contact and more information
More information on the SIENNA website: www.sienna-project.eu
Coordinator: Philip Brey, Professor of philosophy of technology, University of Twente. E-mail: email@example.com, phone: +31 53 489 4426.
Deputy coordinator: Rowena Rodrigues, PhD, Senior Research Analyst, Trilateral Research Ltd. E-mail: firstname.lastname@example.org phone: +44 75 515 324 79
Communications: Josepine Fernow, SIENNA communications manager, Uppsala University, E-mail: email@example.com, phone +46 18 471 62 22.
The SIENNA project – Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact – has received just under € 4 million for a 3.5-year project under the European Union’s H2020 research and innovation programme, grant agreement No 741716.
The project is coordinated by the University of Twente in the Netherlands with support from Trilateral Research, United Kingdom. Other partners include Uppsala University (Sweden), Helsinki Foundation for Human Rights (Poland), the European Network of Research Ethics Committees, University of Granada (Spain), Ionian University (Greece), Federal University of Rio de Janeiro (Brazil), Dalian University of Technology (China), French National Centre for Scientific Research (Sciences Po) (France), and the University of Cape Town (South Africa). SIENNA has two associate partners, Chuo University (Japan) and the Berkman Klein Center for Internet & Society (USA). The project is also supported by organisations such as the World Health Organization, the Human Genome Organisation, IEEE, ACM, EURobotics, ALLEA (All European Academies), UNESCO and the Council of Europe.
Disclaimer: This text and its contents reflect only SIENNA’s view. The Commission is not responsible for any use that may be made of the information it contains.