Applications, benefits and concerns of human genomics

The SIENNA project's proposal for an international Code of Conduct for data sharing in genomics was recently published in Developing World Bioethics. Want to know more? 

Want to take a look at our ethical frameworks for AI & Robotics, Human Enhancement and Genetics & Genomics? The last of the SIENNA project's reports were recently made public on Zenodo and are now available for download!

SIENNA was announced a champion project at the World Summit on the Information Society prizes award ceremony on 31 May 2022. The WSIS Prizes contest was developed after requests from stakeholders to create a mechanism to evaluate projects and activities that have leveraged the power of information and communication technologies to advance sustainable development in different ways. 

The SIENNA project has issued a series of policy briefs that have now been translated to Greek!

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!

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!

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!

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!

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!

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.

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!.

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!  

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.

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!

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!

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.

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!

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.

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.

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!

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. 

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! 

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. 

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!

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.

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 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?

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”.

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. 

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.

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! 

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.

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!

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.

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. 

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 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! 

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.

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!

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!

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.

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. 

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.

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.

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!

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!

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.

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.

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!

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.