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.
Regulating human germline editing is not a straightforward matter. It raises questions about who has the competence to govern science, and who has the authority to do so. Several actors have contributed to shaping the legal frameworks applicable to human germline governing as it stands today. Still, human germline governance is not uniform and comprehensive. More strong, international voices are needed to protect the genetic integrity of individuals and humanity as a whole from the misuse of science advances.
Safeguarding the genetic integrity of individuals and humanity is not an easy task. National legal approaches attempt to regulate the human germline and protecting humans from destructive implications of this technology. However, as the case of Sweden demonstrates, these approaches might not necessarily be able to tackle advances in gene editing technologies, and risks emerge. Santa Slokenberga and Heidi Carmen Howard in an article recently published in Förvaltningsrättslig tidskrift argue that if one case falls through the gaps in the law, that case is one too many.
Contrary to other scholars, the authors suggest that when deficiencies in national law put humanity at stake, attempts at filling the gaps might not be sufficient. Instead, they suggest revisiting the legal framework, and leaving no gaps for cases to slip through.
In Sweden, interventions in the human germline are regulated under the Swedish Genetic Integrity Act (Lag (2006:351) om genetisk integritet m.m.). However, since 2006, great strides have been made in genomics. Many of the resulting experiments and clinical procedures that these technologies currently enable were mere science fiction when the Genetic Integrity Act was drafted. With the passing of time and advances in technology, the genetic integrity Sweden set out to safeguard in its national jurisdiction is at risk.
Although the article is a deep dive in Sweden’s legal framework on genetics, the issues raised are not unique to Sweden. Outdated regulation is something all nations have to deal with, especially for state-of-the-art technology where there is a lack of knowledge about associated ethical, legal and social issues, alongside outstanding concerns about their technical performances. Immediate action is necessary to ensure that what one law cannot catch is effectively caught by another. This is true for all countries.
“Taking human germline seriously means establishing clear opportunities for further work to examine technological advances from ethical, legal and social perspectives. And revisiting germline editing and national legislation when, if ever, human germline editing is acceptable,” says Santa Slokenberga, one of the authors.
After examining these issues, the authors argue that findings should be shared with the broader community. Bringing them all the way to EU law and policy makers, and the Council of Europe. This furthers the regulatory dialogue between the national and European level, and opens up to strengthening existing regulatory approaches or paving the way to revisit them.
This paper is more than scrutiny of Swedish regulation. It is also a contribution to the ongoing international debate on the right to enjoy the benefits of the scientific process and its applications.
By Anna Holm & Santa Slokenberga
The paper is published in Förvaltningsrättslig tidskrift: Slokenberga S & Howard HC, The right to science and human germline editing. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act, Förvaltningsrättslig Tidskrift, 2019;2:199-222.
News from SIENNA
Shifting AI ethics from high-level principles to socio-political context
Ethical principles alone are poorly equipped to engage with and address the impacts of artificial intelligence (AI). Whether it be material impacts or the generation of socio-political issues, high-level ethical principles don’t always offer the tools needed to address them. In a recent Open Research Europe paper, SIENNA’s Anaïs Resseguier and Rowena Rodrigues advocate for AI ethics that pays attention to context.
Ethical governance of disruptive technologies
The European Parliament STOA panel organised a workshop on 23 March that took its point of departure from current discussion and legislative agenda in relation to artificial intelligence. Together with the SHERPA and PANELFIT projects, SIENNA helped move the discussion beyond AI to find out how can we build on what was learned from that discourse to prepare for the next wave of scientific and technological advances. Miss the workshop? The event was recorded and is now available for everyone to watch!
TechEthos: New project using ethics to shape technology of the future
Technological developments and breakthroughs often bring shocking and spectacular changes to society. Highly complex, disruptive and transformative, they challenge human values, freedoms and societies. To maximise the benefit for society and minimise potential harms, we need to understand and address the ethical and social implications of new and emerging technologies. Making sure we are not forgetting marginalised and vulnerable populations. As the SIENNA project ends, a new Horizon2020 project begins. Building on our results to bring ethical and societal values into the design and development of new and emerging technologies. Want to know more? We suggest you sign up to the TechEthos newsletter and follow them on Twitter!
Addressing societal concerns in public research funding
On 5 March 2021, the SIENNA project organised a webinar to present and discuss outcomes from our work on addressing societal concerns in public research funding. Miss the webinar? Don't worry, a recording of the presentation by Nicole Santiago is now available!
Promoting ethics for human enhancement technologies
Some human enhancement is controversial socially and morally. They promise the advancement of humanity, but also introduce serious risks to health and well-being, freedom, and equality. Human enhancement research and development can be missed in ethical and legislative review. The field is broad, and enhancement potential can be difficult to predict, especially if such potential is not actively sought. In all cases, guidance is needed. The SIENNA project just published a policy brief that aims to addresses the need for policies aimed at ethical guidance for research, development and deployment of human enhancement technologies.
Ethics, Human Rights & Emerging Technologies: SIENNA final conference recording available!
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, and the methods and instruments propose to govern need for ethical guidance and governance of emerging technologies. We have recorded our presentations on regulation, innovation policies, research ethics frameworks, Ethics by Design methodologies, education and training progammes, standards, and certification. Did you miss the event? Don't worry! We recorded it!
Joint SIENNA/SHERPA/HBP webinar 30 March: Trust and Transparency in Artificial Intelligence
Trust and transparency in artificial intelligence (AI) are hotly debated themes and central to the responsible governance of this expanding technology field. The Ethics and Society Subproject of the Human Brain Project (HBP) has developed an Opinion to further the debate on key ethical and social issues that arise from the use of AI. It draws on findings from social science and humanities research, including a series of consultancies, webinars and workshops with citizens, scientists, policy makers and other stakeholders.
What a well-regulated AI and robotics world would look like
In the SIENNA Final Conference on 11 March 2021, we facilitated a session on AI and robotics: regulatory and policy recommendatiions. The session was led by Rowena Rodrigues form Trilateral Research and covered SIENNA legal analysis work for AI and robotics and our recommendations. SIENNA’s objective in its legal analysis work and recommendations is to support and ensure ethical and human-rights respectful design, development, deployment and use of AI and robotics technologies. During the session, we asked our audience to share their views live with us on two questions. Curious about the results?
Ethics & human rights for new and emerging technologies: Take home messages from the SIENNA project
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. Interested to know more? We have published a policy brief summarising the key messages that can be drawn from the SIENNA project!
Enhancing national legal frameworks for AI & robotics: SIENNA project Policy Brief #3
National policy-makers should ensure that any changes in legislation responding to AI and robotics are fit for purpose and in accordance with the country’s international obligations, especially with regards to human rights and societal values. There is need for legal clarity and guidance.
Policy options for the ethical governance of disruptive technologies: open STOA panel on 23 March
We invite you to an online event that takes its point of departure from the current discussion and legislative agenda of AI. Focusing on issues and challenges in need of particular attention, and how can they be addressed: Moving beyond AI to find out how can we build on what was learned from that discourse to prepare for the next wave of scientific and technological advances. The SHERPA, SIENNA and PANELFIT projects have been involved in developing the programme and panels, and now we invite you to join the STOA panel on 23 March!.
SIENNA webinar on societal concerns in public research funding
Both public research funders and researchers have an obligation to the public to ensure that research has a positive impact on society, which includes addressing concerns and mitigating potential harm. Societal concerns about new and emerging technologies relate to ethical, human rights, and socio-economic impacts – many of which were identified in the SIENNA project. Join us online on Friday, March 5 at 13.30 CET to discuss methodology for identifying and addressing societal concerns in public research on new and emerging technologies!
Enhancing EU legal frameworks for genetics & genomics research: SIENNA project Policy Brief #2
The existing EU legal frameworks are relevant for regulating human genomic technologies and should be able to cope with many of the challenges that they pose. However, SIENNA 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, On our recent policy brief, we list some of the urgent actions required and recommendations for the European Union institutions, and the Member States.
Ethics self-assessment for genetic and genomic research
Patients are key stakeholders in genomic research. On January 18, the SIENNA project organised a webinar to present our proposal for operational guidelines for ethical self-assessment of research in genetics and genomics. The webinar was designed to enable patient organisations, patient advocates, patients and their to give informed input in this process. A recording is now available on YouTube!
Thank you for contributing in our public consultation process!
Between 11-25 January the SIENNA project shared proposals for public consultation. The documents outline ways to suppor the ethical management of human genetics and genomics, technologies that can be used to enhance human abilities, artificial intelligence and robotics. The input will now feed into the reports we submit to the European Commission. Want to know more? Join us on 11-12 of March when we present the results from the project at our final conference!
Save the Date for the SIENNA final conference: 10-12 March
The SIENNA project is coming to an end. We invite you to an online event on 10-12 March where we will present and discuss our results and proposals for the ethical management of human genomics, human enhancement, artificial intelligence and robotics. And how the SIENNA approaches can be generalised to other new and emerging technlogies.
Last chance to give input: public consultation ends 25 January!
Monday 25 January is the last chance to give input in our public consultation on proposals for the ethical management of new and emerging technologies. Don't forget to submit your feedback on our documents!
Enhancing EU legal frameworks for AI & robotics: SIENNA project Policy Brief #1
In practice, existing EU legal frameworks like human rights, data protection, product liability and safety, are fully applicable and should be able to cope with the challenges posed by AI and robotics, and other emerging technologies. SIENNA has identified various gaps and challenges that must be addressed. In our first policy brief, we list some of the urgent actions required and make recommendations for European Union institutions.
SIENNA genomics public consultation: Webinar for patients and publics on 18 January
Most genetic disorders are rare and research is necessary to develop treatments for future patients. The SIENNA project has developed stakeholder informed proposals for the ethical management of new and emerging technologies. One of these proposals is an operational guidance for ethical self-assessment of research in genetics and genomics. Patients are key stakeholders for this research. Therefore, the SIENNA project invites patient organisations, patient advocates, patients and their carers to a webinar explaining the proposal with the aim to ensure patients are able to give informed input in this process.
Public consultation on ethical guidance for genomics, human enhancement, artificial intelligence and robotics
New technologies challenge our notions of what is ethical. The SIENNA project has developed stakeholder informed proposals for the ethical development, deployment and use of new and emerging technologies. Between 11-25 January we invite you to a public consultation of a group of documents with concrete ethical guidance for human genetics and genomics, human enhancement, artificial intelligence and robotics! Want an invitation? Subscribe to our newsletter to make sure you receive information the minute the documents become available.
Ethical framework for artificial intelligence and robotics
In the past couple of years many national and international organisations issued ethics guidelines for artificial intelligence (AI). But the efforts to address ethical issues in AI in other ways have not reached the same prominence. In the SIENNA project, we have developed an ethical framework for AI and robotics that rests on a multistakeholder strategy that moves far beyond ethical guidelines.
Framework for ethical self-assessment in genomic research
PhD students are expected to reflect on ethical aspects of their research projects. This requirement is stated in legal premises and regulatory frameworks for academic institutions around the world. When applying for research funding researchers are also expected to make an ethical assessment related to their proposed research project. SIENNA has developed an ethical framework for human genomics. This has been translated to operational guidelines for ethics self-assessment. On 11 January 2021, we invite you to take part in a public consultation. Want to know more? Sign up to receive the documents!
Protecting the vulnerable from AI harms
Applications that use artificial Intelligence are trained on large sets of data and often build on other systems. This means that any bias in the data can multiply across different AI applications and cause significant harms. A recent paper from SIENNA points to the legal and human rights implications of AI and calls for an agile approach, not just to AI development, but also to the laws that regulate technology. In her paper, Rowena Rodrigues issues a call to developers and legislators to pay attention to the impact of AI on vulnerable populations.
Simple solutions to complex issues? Technology and the human brain
Neurotechnological developments could shift focus away from complexity and careful consideration of the human condition. In a recent paper, SIENNA’s Yasemin J Erden writes about the convergence of neuroscience, neurotechnology, psychiatry, and artificial intelligence for diagnostic processes. And how taking an over-optimistic approach to technology developments might result in a simplistic view on complex issues like mental illness and psychiatric disorder.
Webinar on ethical guidelines for human enhancement on 14 December
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. On 14 December, SIENNA invites you to participate in a webinar on ethical guidelines for technologies that can, or could, be used to enhance human abilities.
SIENNA responds to public consultation on children's rights in digital environments
On 13 November 2020, we submitted our response to the United Nations Committee on the Rights of the Child (the Committee) draft General Comment No. 25 on children’s rights in relation to the digital environment. Our key recommendation is to address children’s rights in relation to all digital technologies. Additional recommendations include adopting stronger ‘red lines’ on digital technologies that impact children, calling for AI that respects children’s rights, and addressing concerns related to digital inequality.
Time for ethical guidance for human enhancement?
Until recently, human enhancement technologies were mostly science fiction. Today, implants, drugs and prosthetics are available to enhance human abilities. Despite intense discussions in society and academia, few efforts have been successful in establishing ethical guidance for the use and development of these technologies. Could now be a good time to develop such guidelines? SIENNA researchers are trying to find out. Curious? Download our report!
SIENNA response to the public consultation on UNICEF’s draft Policy Guidance on AI for Children
On 16 October 2020, the SIENNA project submitted its response to the UNICEF public consultation on draft Policy Guidance on AI for children. Our key recommendations were to address concerns related to “digital inequality”, call for AI that respects human rights, and adopt a stronger stance on problematic technologies.
SIENNA response to the French Committee for Digital Ethics public consultation on the ethics of conversational agents
On 30 October 2020, the SIENNA project submitted its response to the French National Pilot Committee for Digital Ethics (CNPEN) public consultation on the ethics of conversational agents, what is more commonly known as 'chatbots'. Our key recommendations were to reduce the anthropomorphisation of chatbots and conduct impact assessments to identify risks and harms.
Ethical debates about genetic cognitive enhancement: Time to broaden the discussion
SIENNA findings show that attitudes to human enhancement technologies and research on the genetics of human intelligence vary greatly across different economic, cultural, and social landscapes. One potential way to enhance human abilities, including our cognition, is by interfering in IVF processes. So far, the ethics debate has centred on gene editing using the CRISPR technique. However, there is not as much talk of embryo selection as a method for genetic human enhancement. In a recent publication, Marcelo de Araujo emphasises the need fill this gap.
Public awareness & perceptions of genetics and genomics
Technology used in 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. We asked 11,000 people in 11 countries about new and emerging technologies. On average, half of respondents were familiar with genetics and DNA. But despite saying they had heard or read about it, a large majority of them said that there is a need for better public understanding of genetics and genomics. Want to know more? Read our report!
Public awareness & perceptions of human enhancement technologies
Implants, drugs, genetic enhancement and prosthetics can enhance human abilities. But using technology for human enhancement 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. SIENNA asked 11,000 people in 11 countries what they think about technologies that can be used to improve human abilities. It turns out that South African, Greek and Brazilian respondents were most positive towards the use of different human enhancement technologies, while people in Germany, the US and France were more hesitant. Curious about what they think we should and should not enhance? Read our report!
People prefer robots that look different from them
Robots and artificial intelligence have caught the public’s imagination. A survey of public attitudes to these technologies in eleven countries shows that people feel uncomfortable with robots that look and behave like humans. A study from the SIENNA project shows that people expect both society and their lives to change as a result of increased use of artificial intelligence and robotics. And they expect inequalities in society to increase with it.
Mapping the ethics of human genomic technologies
SIENNA has carried out an extensive ethical analysis of human genetics and genomics. We have identified a number of ethical, legal, and social issues both relating to new and emerging technologies within the next 5-10 years. You will find them outlined in our ethical analysis report.
SIENNA submits response to the public consultation on the European Commission Inception Impact Assessment for regulation of Artificial Intelligence
On 10 September 2020, the SIENNA project submitted its response to the European Commission public consultation on the Inception Impact Assessment for a regulation of artificial intelligence. Our key recommendation was to adopt an EU-level legislative instrument establishing mandatory requirements, complemented by a voluntary labeling scheme.
Ethics as renewed clarity about new situations
Artificial intelligence is developing faster than the ethical frameworks that regulate it. This requires AI ethics that can to adapt to the new and unexpected. Today, the Ethics Blog writes about a call by SIENNA researchers Anaîs Rességuier and Rowena Rodrigues to move from a legal notion of ethics to one that can adapt to new situations.
Toothless ethics is an obstacle for the ethics of Artificial Intelligence
Ethics has powerful teeth that are not used in the ethics of AI today. In a recently published paper in Big Data & Society, SIENNA’s Anaïs Resseguier and Rowena Rodrigues describe how the teeth of AI ethics are lost with the current “law conception of ethics”.
SIENNA submits response the UNESCO Online Consultation: Ethics of Artificial Intelligence
On 30 July 2020, SIENNA project submitted its response to the UNESCO Online Consultation on Ethics of Artificial Intelligence. We suggest bringing human rights to the fore and focusing on ethical principles that relate to the interaction between AI systems and their environment, including human beings.
Research ethics codes and guidelines for human enhancement
Although there are no international research ethics codes or guidelines for the broad overall topic of human enhancement, we have surveyed selected relevant codes and guidelines for technologies that can be used for this purpose. If you want to know more about specific angles on particular contexts, often national or focused on application areas, we are able to offer you a large body of codes and guidelines!
SIENNA submits response the public consultation on the European Commission White Paper on AI
On 13 June 2020, SIENNA project submitted its response to the European Commission public consultation on the White Paper on AI. Our key recommendation was to change the focus of the proposed regulatory framework. Instead of aiming at building consumers’ and businesses’ trust in AI in order to speed up the uptake of the technology, the objectives of the framework should be driven by fundamental rights and societal values.
Webinar 1 July: Ethical analysis of AI & Robotics
The SIENNA project recently published its key report “Ethical Analysis of AI and Robotics Technologies”. This 223 page report provides the most comprehensive and up to date overview of ethical issues in AI and robotics available today. Philip Brey, SIENNA coordinator will present the highlights in an open webinar on 1 July at 13:00 CEST!
Legal requirements for human enhancement technologies
Want to better understand legal developments and regulatory approaches related human enhancement? The SIENNA project has documented and delivered a critical assessment of the legal issues raised by human enhancement technologies in and outside the EU. We looked at the national, EU and international level. If you want an analysis of EU law and international and regional legal orders in relation to human enhancement, we suggest you download our report!
SIENNA and SHERPA provide feedback on JURI report on a framework of ethical aspects of artificial intelligence, robotics and related technologies
On 22 May 2020, SIENNA and SHERPA projects, jointly provided feedback on the European Parliament Committee on Legal Affairs Draft report with recommendations to the Commission on a framework of ethical aspects of artificial intelligence, robotics and related technologies (2020/2012(INL) based on the findings and results of the SHERPA and SIENNA EU-funded projects.
Webinars 17 June: Enhancing legal frameworks
We need expert and stakeholder input, because regulating new and emerging technologies raises questions that require broad discussion. The SIENNA project would like to invite join our webinars on 17 June 2020 to discuss how to enhance the legal frameworks for human genomics, human enhancement, artificial intelligence and robotics technologies. Depending on your area of interest, you can join one, two or all of them!
Legal requirements for artificial intelligence and robotics
The SIENNA project has documented and delivered a critical assessment of the legal requirements in relation to the use of artificial intelligence and robotics on the national, EU and international level. In the report, we identify the relevant international and regional law and discuss a range of legal and human rights issues. If you want an analysis of EU law and international and regional legal orders in relation to artificial intelligence and robotics, we suggest you download our report!
Legal requirements for the use of human genomics technologies
Want to know what is allowed? The SIENNA project has documented and delivered a critical assessment of the legal requirements in relation to human genomics in and outside the EU. The work includes human rights aspects and also some aspects of animal research as a stage in clinical research. In the report, we argue that a human rights framework may provide for an important point of reference for shaping future legal responses in the field.
Research ethics codes and guidelines for artificial intelligence and robotics
The SIENNA project conducted a survey of research ethics committee approaches and codes for artificial intelligence and robotics. The survey was submitted to the European Commission in 2018, and lists a large body of codes and guidelines. We have now published the full report, and give you selection of guidelines that you might want to be aware of.
Research ethics codes and guidelines for genomics
The SIENNA project conducted a survey of research ethics committee approaches and codes for human genomics. The survey was submitted to the European Commission in 2018, and lists a large body of codes and guidelines. We have now published the full report, and give you selection of guidelines that you might want to be aware of.
COVID-19 and climate change: Why has the response been so different?
COVID-19 emerging as a global threat has states and civil society to taking radical measures to limit its spread. But, in spite of mounting evidence that climate change will also have devastating consequences for humanity over the next decades, governments and civil society have been far less engaged in adopting effective measures to avert dangerous climate change. Why?
Public online lecture on false messages and false messengers
Fake news have been around for a long time. As part of a postgraduate course on information ethics and law, SIENNA’s Maria Bottis at the Ionian University is organising a public online lecture with Rafael Capurro starting from his recent paper “Pseudangelia - Pseudangelos: On False Messages and Messengers in Ancient Greece”.