SIENNA: Preparing the ground for responsible innovation
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 receives a financial contribution of just under €4 million from the EU’s Horizon 2020 programme.
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.
Today, we are closer to scenarios we could only have pictured in science fiction a few decades ago. Genetic diagnosis is not new. These tools have been used for decades to screen and test individuals and families with hereditary disorders. However, new gene editing tools that could help treat genetic diseases are on the horizon. At least in theory, this could be used to ‘design’ or modify specific genetic traits in humans. Similarly, education and exercise have long been understood as tools to enhance our abilities. Newly developed technologies promise a more specific and more effective way to enhancement. Advances in artificial intelligence and robotics could perhaps promise to fill jobs currently done by humans. Which, in turn, could affect what employers expect from their staff.
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, bringing together researchers from Europe, Asia, Africa and America. Suggestion: Adapt by adding text about your organisation and work.
“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.
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 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?
Both the public and policy makers are concerned about these issues. 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. 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
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 from the University of Twente in the Netherlands with support from Trilateral Research Ltd, 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 reflects only SIENNA's view. The Commission is not responsible for any use that may be made of the information it contains.
News from SIENNA
AI and robotics adverse impacts – how resilient or vulnerable are we?
Individuals and society benefit from advances in human genomics, human enhancement, AI and robotics technologies. But these technologies present ethical challenges and have the potential to challenge our values, way of living and adversely affect human rights.
Gene editing in human embryos: What women are (not) informed about in consent forms
When research poses health risks to research participants, it is important to make sure there is necessity and acceptability of that research. However, for germline gene editing, there is no clear medical need. In a recent paper in the CRISPR journal, Emilia Niemiec and Heidi C. Howard argue that this raises questions about undue incentives to participate in research.
Genomics and public health
Many applications of genomic technologies raise ethical issues. Emilia Niemiec and Heidi Howard highlight some of them in a chapter in a recent book on applied genomics and public health. They underline the need for education and research on ethical aspects of new genomic technologies. They also highlight the potential of genomic technologies and the problems they introduce.
SIENNA legal analysis webinar on 5 March!
The SIENNA project has produced a legal analysis of issues and human rights challenges of artificial intelligence, robotics, human enhancement and human genomics technologies and studies of how they are handled in different jurisdictions. We now invite you to hear a presentation of the results in a webinar on 5 March 2020, at 2PM Central European Time!
Into human enhancement? SIENNA newsletter out today!
SIENNA has published a state-of-the-art review on human enhancement technologies. If you want to read about it, download it, and find out what else we have done and haven’t received the e-mail, you are not on our list. So go ahead and sign up to find out what we do! (or read it by clicking the link below).
State-of-the-art review of human enhancement
The SIENNA team working on the ethical, legal and human rights issues of human enhancement technologies finished their state-of-the-art review of the field. The report offers overviews of the philosophical debate around the issue, of the existing and expected applications, and a socio-economic impact assessment of human enhancement technologies. SIENNA researchers also identified six subcategories of enhancement, all of which you can read about in the state-of-the-art report that is now available for download on the SIENNA website!
A new era for DNA testing requires new regulation
The European regulatory landscape is a patchwork, where policymakers and scientists work to harmonize regulations at different levels: international, the EU and in the member states. A recent article published in Politico writes that online commercial DNA testing companies have the upper hand in the EU. Partly because the fragmented regulation is difficult to enforce.
US White House issues set of binding AI principles for agency regulators
The US White House’s Office of Science and Technology Policy has issued what they call a "first of its kind" set of principles that federal agencies have to meet when they draft AI regulations. The public will now have 60 days to comment.
SIENNA: plans for 2020
The SIENNA project wishes you happy holidays! In 2020, we will us the data we have collected so far to develop ethical frameworks for Human Genomics, Human Enhancement, AI and Robotics. Our work will also be translated to guidelines for researchers and innovators in industry and academia, protocols and operational guidelines for research ethics committees, recommendations for better legislation, and more!
Greek law on Human Enhancement
Like in many other countries, there are no specific laws relating to human enhancement technologies in Greece. However, there is more general legislation that can be applied to human enhancement. Because of this lack of legislation, the Greek Commission on Bioethics has issued two separate Opinions on Human Enhancement. In a pre-print article in SSRN, SIENNA legal scholar Maria Canellopoulou-Bottis from the Ionian University in Greece presents the Greek law on human enhancement.
Presenting our work for the European Commission!
Today, work package and task leaders from the SIENNA project are in Brussels to present our work to the H2020 project officer and an expert external reviewer. We are looking forward to this opportunity to review what we have done so far, and receiving feedback to improve what we do in the future.
SIENNA, PANELFIT and SHERPA: New video on three H2020 projects working together
New technology benefits individuals & society. It also challenges our notions of what is ethical. Three H2020 projects have joined forces to improve ethical, human rights & legal frameworks: SHERPA, PANELFIT and SIENNA. We just launched a new video to show how we explore the ethical, legal and human rights questions that information & communication technologies, big data, artificial intelligence and smart information systems raises, for example in relation to data commercialization, cybersecurity and consent.
SIENNA and SHERPA training on ethics and artificial intelligence for European Commission
On November 26, the SIENNA and SHERPA projects are invited to organize an interactive workshop for the European Unions’ different research funding schemes. The workshop is called “Ethics and Artificial Intelligence: Foreseeing the Impact and Shaping the Future” and will present findings from both projects. The focus is on the different ethical dimensions and impact of AI on the future of our society, legal- and ethical frameworks.
Into AI & robotics? SIENNA newsletter out today!
SIENNA has published a state-of-the art review on artificial intelligence and robotics. If you want to read about it, download it, and find out what else we have done in the last six months and haven't received the e-mail, you are not on our list. So go ahead and sign up to find out what we do! (or read it by clicking the link below).
State-of-the-art review of AI and robotics complete!
The SIENNA team working on ethical, legal and human rights issues of artificial intelligence (AI) and robotics have conducted a state-of-the-art review of the fields of AI and robotics. The report is now available for download! It offers a thorough analysis of the central concepts, the history, the present and expected technologies and applications of AI and robotics, as well as a socio-economic impact assessment of current and expected technologies used in both fields. The analysis is based on a thorough literature review. We also did interviews with, and received commentaries from, field experts.
Egg donation for gene editing in embryos expose women to health risks
Current gene editing approaches allow for precise modification of DNA. These could potentially be used to correct disease-causing genes in human embryos.To evaluate the safety and efficacy of this approach, a large number of studies would be needed. To create embryos for this purpose, women have to donate eggs. In a recent Nature correspondence, two researchers from Uppsala University, Emilia Niemiec and Heidi Howard, draw attention to the health risks associated with egg donation in this context.
Should political ads be banned on social media?
Twitter's CEO Jack Dorsay announced that Twitter is banning political advertising on their platform. In the announcement, Dorsey writes that our democratic system might not be ready for machine learning-based optimization of messaging and micro-targeting, unchecked misleading information, and deep fakes. Al Jazeera reached out to SIENNA coordinator Philip Brey to get his view on the subject.
AI and robotics from a Spanish point of view
Developments in artificial intelligence and robotics are changing societies and affecting human rights. These technologies are expected to be the greatest money makers of the 21st century. Spain cannot turn its back on the expected financial and societal gains from AI and robotics development. So writes SIENNA's Javier Valls Prieto in a Spanish language blog post in The Conversation.
SIENNA at ENERI final conference
The ENERI project is coming to an end. On October 28-29, they will bring together leading ethics experts, researchers, policy makers, representatives from industry, research funding organisations, civil society and other stakeholders to disseminate the concepts and products developed during the three-years term of the project. SIENNA will be represented in a panel with other SwafS RE and RI projects.
Planning for the future!
Planning for the future and moving the project forward. 24-25 September, we met in Paris to discuss SIENNA impact and sustainability... Have a look below to learn what we talked about!
From data collection and analysis to frameworks and codes
Right now, members of the SIENNA consortium are meeting in Paris to decide how we move from collecting and analysing data to developing ethical frameworks and codes. We will also discuss how to ensure that we deliver outputs that stakeholders in human genomics, human enhancement, artificial intelligence and robotics both want and are able to use.
#HumanAI: New UNESCO video about the ethics of AI
Following #HumanAI? Take the opportunity to find out more about the work beind the hastag! UNESCO is celebrating 25 years of ethical reflection on bioethics and the ethics of science and Technology and have recenly released a new video about the ethics of AI: “Do You Know AI? Or AI Knows you Better? – Thinking Ethics of AI”.
What happens with technical progress if we get AI ethics wrong?
Right now, many governments and regulators struggle to keep up with how new technologies like artificial intelligence is developing. In the latest issue of the EU Research and Innovation Magazine Horizon, Professor Philip Brey, coordinator of the SIENNA project, and Berdnt Stahl, coordinator of the SHERPA project, share their thoughts on how geting AI ethics wrong could ‘annihilate technical progress’.
Setting future ethical standards for ICT, Big Data, AI and robotics
Policymakers struggle to assess the ethical, legal and human rights impacts of IT systems in research, industry, and at home. At the same time, research needs to be useful for industry, academia, and society to have impact on policy. The PANELFIT, SHERPA and SIENNA projects just published an editorial in Orbit to explain how we collaborate and work together with stakeholders to improve ethical, human rights and legal frameworks for information and communication technologies (ICT), big data analytics, artificial intelligence (AI) and robotics.
Now on YouTube: SIENNA, SHERPA & PANELFIT collaboration
The SIENNA, SHERPA and PANELFIT webinar on May 20 2019 marked the start of an active European collaboration in the ethics, law and human rights of emerging digital technologies. Now you can watch it on YouTube! Learn about the projects' work on artificial intelligence (AI), big data, smart information systems (SIS), and information and communication technology (ICT) in general.
Call for papers on Ethics by Design: Deadline extended to July 1
The SIENNA and SHERPA projects are issuing a call for papers for a track on ethics by design at the 4TU Ethics Biannual Conference entitled "The Ethics of Disruptive Technologies" at TU/Eindhoven, The Netherlands, on November 7-8, 2019. Deadline for submission has been extended until July 1!
Neuroenhancement of children and adolescents raises ethical questions
How much should we be allowed to shape your children? And what are the ethical an social questions that arise from enhancing young people? Lately, discussions on “neuroenhancement” have become relevant, both in academia, medical practice and among the public. A recent book edited by Saskia Nagel offers a unique collection of articles on pediatric neuroenhancement.
The underdog in the AI ethical and legal debate: human autonomy
Advances in AI will have serious and lasting consequences for human autonomy. But does the increasing autonomy of machines necessarily imply a decreasing human autonomy? This week, SIENNA researchers Rowena Rodrigues and Anaïs Rességuier from Trilateral Research write about the underdog of the AI ethical and legal debate on the Human Brain Project's Ethics Dialogues blog.
Want to know more about the ELSI of Human Enhancement? Connect to find out what we do!
Education and exercise can enhance our abilities. So can technology: in the form of implants, drugs, genetic enhancement or machines. This comes with ethical, legal and social challenges. As a society, we need to discuss the ethical questions of what is normal, what is natural, what is moral and what can be permitted.
Call for papers: Ethics by Design
The SIENNA and SHERPA projects are issuing a call for papers for a track on ethics by design at the 4TU Ethics Biannual Conference entitled "The Ethics of Disruptive Technologies" at TU/Eindhoven, The Netherlands, on November 7-8, 2019. Deadline for submission extended until July 1.
Interested in the ELSI of Human Genomics? Connect to find out what we do!
New and improved technologies for genetic and genomic research are slowly making their way from research to patients and consumers. This raises ethical, legal and social questions for both individuals and society. Today, the SIENNA project sent our first update to stakeholders in Human Genomics. Not on our list? Sign up to find out what we do!
Human Enhancement: legal analysis complete!
SIENNA partners have completed their research on legal developments and human rights challenges related to human enhancement technologies. We have covered the legal developments on the international level and in the EU, and completed 12 country studies of the national level, looking at the relevant laws and human rights standards.
The right to science and human germline editing
In a recently published article titled “The right to science and human germline editing. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act”, Santa Slokenberga and Heidi Carmen Howard argue this right to science should also include protection against scientific advancements with destructive implications for humans, their rights and humanity.
Don't forget to register for the SIENNA-SHERPA-PANELFIT webinar on May 20!
On Monday 20 May, 2019, three Horizon 2020 projects working with the ethical, legal and human rights aspects of different IT-technologies present in a joint webinar. Find out how we will contirbute to responsible AI, big data and data sharing.
Into AI & robotics? Connect to find out what we do!
More and more people are interacting with robots, smart devices, intelligent software, prosthetics and implants. They are used in industry, the education system, health care, our homes, the entertainment industry and military applications. The potential benefits are abundant. However, there are considerable ethical and legal challenges. Today, the SIENNA project sent our first update to stakeholders in AI and robotics. Not on our list? Sign up to find out what we do!
Legal analysis of genetics and genomics complete!
The SIENNA project completed our research on the legal developments, issues and human rights challenges for human genetics and genomics. We have covered the legal developments in different international legal orders (UN, ASEAN, AU, CoE and OAS) and in the EU, and completed studies in 12 countries, where we have looked at relevant laws and human rights standards on the national level.
Public opinion surveys and panels complete!
Besides input from experts, the SIENNA project is committed to include public opinion in our work. The results will inform the ethical evaluation and the development of ethics protocols and codes. On 27 April 2019, we ended our data collection. In all, we have completed telephone surveys with over 11,000 people in 11 countries and citizen panels in 5 countries. Now, the work to analyse the data begins.
Law, AI and robotics: Legal analysis complete!
SIENNA partners have completed their research on legal developments, issues and human rights challenges related to artificial intelligence (AI) and robotics. We have covered the legal developments on the international level and in the EU, and completed 12 country studies of the national level, looking at the relevant laws and human rights standards.
Free on May 20? Find out more about SIENNA, SHERPA and PANELFIT!
On May 20, 10 AM CET, the SIENNA, PANELFIT and SHERPA projects will explain what we do, where the overlaps are, and how we intend to work together to improve ethical, human rights and legal frameworks for artificial intelligence, big data, smart information systems, and ICT in general.
Stakeholder and expert input to SIENNA's ethical analysis
Today and tomorrow, SIENNA consortium members meet experts and stakeholders in Athens to discuss the project's approach to ethical analysis. Participants will discuss methods and approaches to integrate stakeholder perspectives and public opinion in ethical assessments of new technologies.
Harnessing existing human rights jurisprudence to guide AI
You don’t have to look too hard to become acutely aware of the potential dangerous effects of the development and use of algorithms and AI. It is already common knowledge that in the wrong or reckless hands these technologies may sway elections, lead to discrimination, and inhibit freedom of speech or access to information. It is then trite to say that algorithms and AI can pose serious challenges to individuals and the protection of their human rights.
Applications, benefits and concerns of human enhancement
Human enhancement is no longer science fiction. Developments in biomedicine and neuroscience demands practical discussion about its ethical, legal, and social implications. SIENNA uses a structured approach to examine the challenges to society. Check out our new infographic to find out more about the applications, benefits and concerns related to human enhancement technologies!
Applications, benefits and concerns of human genomics
Today, DNA can be “read” much faster and cheaper than just a decade ago. Genetic testing can reveal information about the health of adults, children, and foetuses. At the same time, another new technology for gene editing has become available: CRISPR/Cas9, that allows for modification of DNA in humans. Check out our new infographic to find out more about the applications, benefits and concerns related to human genetics and genomics!
Human genomics: New project video!
Genome' is a word for all our DNA. DNA information can tell us about our health. It can help us diagnose a disease, help prevent future ones, and tell us about the health of our relatives. Scientists study our DNA, and have tools that can modify it. Want to know more? Check out our new video clip!
Recap of Human Genomics foresight workshop
On 18 January, the SIENNA project arranged a foresight workshop on human genetics and genomics. Stakeholders and experts spent the day discussing the future ethical and impacts. A short report is coming, but for anyone interested, a recap of the event is available on Twitter.
Recap of Human Enhancement foresight workshop
On 16-17 January, the SIENNA project arranged a foresight workshop on human enhancement. Stakeholders and experts spent one and a half days discussing the future ethical and impacts. A short report is coming, but for anyone interested, a recap of the event is available on Twitter.
Call for papers: Ethics and Human Rights in Smart Information Systems
Interested in the ethics and human rights issues in smart information systems? Join the SHERPA, SIENNA. PANELFIT, ORBIT projects and others in the IEEE Smart World Conference forum thisyear! Call for papers closing 26 April 2019.
Recap of AI & Robotics foresight workshop
On 15-16 January, the SIENNA project arranged a foresight workshop on artificial intelligence and robotics. Stakeholders and experts spent one and a half days discussing the future ethical and impacts. A short report is coming, but for anyone interested, a recap of the event is available on Twitter.
Tell us what you think are the important future technologies in human genomics!
We want to know what you think are the most important upcoming technological developments in the field of human genetics and genomics? The technologies can be in any stage of development: as ideas, under development or in an initial stage of implementation. Answer our survey by Thursday 17 January!
Season's greetings from SIENNA
Happy holidays from the SIENNA consortium partners in the Netherlands, China, Germany, Brazil, Poland, Greece, United Kingdom, France, Spain and Sweden, and our associate partners in Japan and the US.