The Sienna Reports
SIENNA methodology
Rowena Rodrigues, Stearns Broadhead, Philip Brey, Zuzanna Warso, Tim Hanson, Lisa Tambornino, & Dirk Lanzerath. (2018). SIENNA D1.1: The consortium's methodological handbook (Version V0.6). Zenodo. https://zenodo.org/record/4247384#.YXfGrp5ByUk.
This Handbook brings together and describes the SIENNA project’s theoretical and methodological approaches for ethical, legal and human rights analyses, societal acceptance and awareness studies, development of research ethics protocols and professional ethical codes. This Handbook is a reference source for work packages 2 (genomics), 3 (human enhancement) 4 (AI and robotics), and 5 (the consortium’s proposals), and it will help to ensure theoretical coherence and methodological consistency. The Handbook also offers references to guidance (where to go) about other project matters, such as research ethics and data management, internal communication tools and protocols, event organisation, quality assurance, citations and formatting, dissemination and communications approach, exploitation, and project sustainability.
State-of-the-art Reviews
Heidi Howard, Emilia Niemiec, & Alexandra Soulier. (2019). SIENNA D2.1: State of the art review of human genomic technologies (Version V0.4). Zenodo. https://zenodo.org/record/4067912#.YXfGwZ5ByUk.
This report presents a review of the state-of-art of human genomic technologies. It firstly provides a brief description and history of the field indicating the shift from relatively small to large scale analyses of DNA (i.e. genetics to genomics). Subsequently, the field of genomic technologies is further defined and demarcated, including its central concepts (such as DNA, genes, genome, sequencing) as well as a description of current and emerging technologies. These include high throughput sequencing used to study the genome and gene editing technologies which are used to modify the genome. Next generation sequencing is currently applied in research on human genomes, in clinical care, in direct-to-consumer setting as well as for forensic purposes. Current and potential clinical uses include to facilitate diagnosis, guide treatment, assess predisposition for diseases, screen (sick) newborns, test foetuses and in carrier screening. Meanwhile, gene editing is currently used only in the research context (including clinical trials for somatic gene editing). In the fourth and last section of this deliverable, we present an overview of current and future social and economic impacts of genomic technologies. The estimated economic value of the genomic technologies market(s) and the issue of patents in genomics are presented. Furthermore, current or potential social impacts of genomic technologies are discussed. These are related, among others, to: the possibility of treating or curing more diseases, discrimination on the basis of genetic information, possibility of creating disparities in society, instrumentalization of embryos, and impact on people with disabilities.
Sean R. Jensen, Saskia Nagel, Philip Brey, Tanne Ditzel, Rowena Rodrigues, Stearns Broadhead, & David Wright. (2018). SIENNA D3.1: State-of-the-art Review: Human Enhancement (Version V1.1). Zenodo. https://zenodo.org/record/4066557#.YXfG3p5ByUk
This report describes the current state-of-the-art in the field of human enhancement. We establish the definition and demarcations for human enhancement that will be used in subsequent SIENNA research on human enhancement, as well as discuss the field in terms of background, positions, and challenges. The report also includes a review of present and expected applications as well as a socio-economic impact assessment. Our conclusion summarises our findings and offers recommendations for how we will proceed with subsequent SIENNA work on human enhancement.
Philip Jansen, Stearns Broadhead, Rowena Rodrigues, David Wright, Philip Brey, Alice Fox, & Ning Wang. (2019). SIENNA D4.1: State-of-the-art Review: Artificial Intelligence and robotics (Version V.04). Zenodo. https://zenodo.org/record/4066571#.YXfG9p5ByUk
This report describes the current state of the art in the fields of artificial intelligence (AI) and robotics. In this report, we establish definitions and demarcations for both fields that will be used in subsequent SIENNA research on AI and robotics. The report discusses the fields in terms of their backgrounds, positions, challenges, and present and expected applications. This report includes a socio-economic impact assessment (SEIA) that examines the current and expected impacts of AI and robotics.
Legal Analysis
Santa Slokenberga, Konrad Siemaszko, Zuzanna Warso, & Heidi C Howard. (2019). SIENNA D2.2 Analysis of the legal and human rights requirements for genomics in and outside the EU (Version V2.0). Zenodo. https://zenodo.org/record/4066659#.YXfHE55ByUk
This report examines how the law currently responds to challenges in the area of genetics and genomics, and identifies the challenges, limitations and gaps that emerge.It also identifies key human rights norms and regulatory approaches that could be examined further for shaping legal responses to the new and emerging technology in the area with due regard to competences and authority of various actors regulating/contributing to the shaping the regulatory environment in the area. It analyses the ethical concerns, scrutinizes the legal and human rights responses in the area of genomics at the international and regional human rights legal orders, and the EU; carries out comparative analysis in selected EU Member States and non-EU countries, and surveys the legal responses, academic legal discussions and legal developments in the areas of concern; examines national comparative perspectives against the international and regional norms and human rights standards; identifies key human rights and legal challenges that emerge regarding genetics and genomics and shows the convergences and distinctions in the regulation of genomics and the challenges this presents for future innovation.
Zuzanna Warso, & Sarah Gaskell. (2019). SIENNA D3.2: Analysis of the legal and human rights requirements for Human Enhancement Technologies in and outside the EU (Version V2.0). Zenodo. https://zenodo.org/record/4066617#.YXfHZZ5ByUk
This report will help readers better understand the international, EU and selected countries’ legal developments and approaches to specific legal issues and human rights challenges related to human enhancement. The report broadly discusses the legal issues and human rights challenges of human enhancement. It analyses relevant international, EU and regional laws and human rights standards. It summarises and compares the results of the country studies on law and human enhancement. It also discusses the adequacy of existing norms and standards and gaps and presents some recommendations that will be further developed in the forthcoming SIENNA work.
Rowena Rodrigues, Konrad Siemaszko, & Zuzanna Warso. (2019). SIENNA D4.2: Analysis of the legal and human rights requirements for AI and robotics in and outside the EU (Version V2.0). Zenodo. https://zenodo.org/record/4066812#.YXfNkJ5ByUk
This report presents the results of SIENNA research on legal developments and approaches to specific legal issues and human rights challenges related to artificial intelligence (AI) and robotics at the international, EU and national level (12 countries, EU and non-EU). The report broadly discusses the legal issues and human rights challenges of AI and robotics and analyses relevant international, EU and regional laws and human rights standards. It summarises and compares the results of the country studies on law, AI and robotics. It also discusses existing norms and standards and gaps and presents some recommendations and ways to overcome gaps. This report will feed into the forthcoming SIENNA work on enhancing the existing legal framework that will identify potential changes needed in dialogue with legislators and relevant committees.
Surveys of research ethics committee approaches and codes
Heidi Howard, Emilia Niemiec, Lisa Tambornino, & Dirk Lanzerath. (2019). SIENNA D2.3: Survey of REC approaches and codes for genomics (Version V0.5). Zenodo. https://zenodo.org/record/4066865#.YXfOAJ5ByUk.
This report is a descriptive document, which includes summaries and detailed lists of normative document searches in human genetics and genomics per country and internationally, as well as preliminary insights into REC members’ awareness and views of normative documents. This informative tool includes a list of over 150 documents addressing genetics and/or genomics in some normative capacity.
Lisa Tambornino, & Dirk Lanzerath. (2019). SIENNA D3.3: Survey of REC approaches and codes for human enhancement (Version V3.0). Zenodo. https://zenodo.org/record/4066874#.YXfOu55ByUk.
This report describes the outcome of task 3.3, the current coverage of ethical guidelines by professional organisations, ethics advisory groups, and research ethics committees for human enhancement. For this task the SIENNA partners searched for documents which could give normative guidance (excluding legislation) for stakeholders in human enhancement. Three kinds of documents were searched for in different EU countries and internationally: professional ethics codes; documents from ethics advisory groups; and guidance documents on how to write research ethics protocols in different EU countries and internationally. Furthermore, representatives of research ethics committees were asked for the following information in an online survey: to what extent are they aware of human enhancement technologies and ethical issues associated with them; and how do they currently approach these issues and do they have plans to more explicitly feature them.
Lisa Tambornino, Dirk Lanzerath, Rowena Rodrigues, & David Wright. (2019). SIENNA D4.3: Survey of REC approaches and codes for Artificial Intelligence & Robotics (Version V1.0). Zenodo.
This report describes the outcome of task 4.3, Current coverage of ethical guidelines by professional organisations, ethics advisory groups, and research ethics committees for Artificial Intelligence and Robotics (AI&R). For this task, the SIENNA partners searched for documents which could give normative guidance (excluding legislation) for stakeholders in AI&R. Three kinds of documents were searched in different EU countries and internationally: professional ethics codes, documents from professional groups and ethics advisory groups, and guidance documents on how to write research ethics protocols in different EU countries and internationally. Furthermore, representatives of research ethics committees have been asked for the following information in an online survey: to what extent are they aware of AI&R developments and ethical issues associated with them? How do they currently approach these issues and do they have plans to more explicitly feature them?
Ethical analysis
Alexandra Soulier, Emilia Niemiec, & Heidi Carmen Howard. (2019). SIENNA D2.4: Ethical Analysis of Human Genetics and Genomics (Version V0.3). Zenodo. https://zenodo.org/record/4068016#.YXfQQ55ByUk
This report is prepared within the context of a European project called SIENNA, which was selected to fulfill the grant call SWAFS-18-2016 . The aims are to identify and present ELSI in human genetics and genomics, both present and emerging issues with a relatively short time horizon. First, we report a presentation of the SIENNA approach to ethical analysis, situated in the landscape of other existing frameworks developed for studying ELSI of genomics. We discuss the merits and challenges of different types of investigations pursued in SIENNA: foresight analysis; overview of ELSI of genomics in 11 countries; public survey in 11 countries; and focus groups in 5 countries. Secondly, we provide an extensive ethical analysis of human genomics . In particular, we focus on the ethical issues pertaining to two areas of human genomics: 1) the study of the genome as currently performed through high throughput sequencing (e.g. with tools such as next generation sequencers); and 2) gene editing (or genome editing: for example, as performed with tools such as CRISPR-Cas9 and other gene editing technologies). The aim of the report is not to make recommendations or present solutions, but only to identify and present ELSI pertaining to genomic technologies within their context of application. The report is based on a description of such technologies in previous deliverable D.2.1 and intends to provide a basis for our next report D.2.7, in which we aim to discuss an ethical framework for human genomics. While the sheer amount of work outlined in, and conducted for, the formal SIENNA approach is laudable, we question whether it is a requirement to use it to obtain the results herein (i.e. could any other ELSI approach have resulted in the same results); we also question whether it is well adapted for the analysis of the ELSI of human genomics in particular. Moreover, we present some difficulties with attempting to include empirical work into normative analyses; beyond the theoretical reasons, we have also experienced logistical issues relating to the specific types of expertise needed to carry out this work and the challenges raised by trying to obtain such expertise via sub-contracting with a for-profit social and policy research company outside of the consortium. Finally, we remain sceptical of too much unwarranted emphasis on technologies as oppose to their uses, since in genomics, the technologies are constantly changing (from PCR machines to next-generation sequencers etc.) and it is how these technologies affect practice (e.g. clinical testing, research, and other areas) that tends to be the heart of the ethical tension.
Sean R. Jensen. (2020). SIENNA D3.4: Ethical Analysis of Human Enhancement Technologies (Version V1.1). Zenodo. https://zenodo.org/record/4068071#.YXfPuJ5ByUk
This report is prepared within the context of a European project called SIENNA which was selected to fulfil the grant call SWAFS-18-2016. The primary aims of this report were to: Identify HET products and applications, above and beyond those found in SIENNA D3.1: State- of-the-Art Review of Human Enhancement Technologies. Identify potential present and future ethical issues. Analyse those issues in a nuanced manner without moralising about them or attempting to resolve them. Therein, this report focusses on mapping the ethics of human enhancement. Analysis consists primarily of judging which topics deserve the most space with the limited time available to complete the report. A secondary aim of this report has been to convey the results of SIENNA’s “country studies” of the national academic and popular media debate on the ethical issues in human enhancement technologies in eleven countries, highlighting the similarities and differences about the academic and media debates between these countries. In comparison to the methods of ethical analysis, our analysis of the country study results has contributed fairly little to the overall identification and analysis of the ethical issues in this report. However, the country study results are expected to contribute more significantly to future SIENNA deliverables.
Philip Jansen, Philip Brey, Alice Fox, Jonne Maas, Bradley Hillas, Nils Wagner, … David Douglas. (2020). SIENNA D4.4: Ethical Analysis of AI and Robotics Technologies (Version V1.1). Zenodo. https://zenodo.org/record/4068083#.YXfQYJ5ByUk
This SIENNA deliverable offers a broad ethical analysis of artificial intelligence (AI) and robotics technologies. Its primary aims have been to comprehensively identify and analyse the present and potential future ethical issues in relation to: (1) the AI and robotics subfields, techniques, approaches and methods; (2) their physical technological products and procedures that are designed for practical applications; and (3) the particular uses and applications of these products and procedures. In conducting the ethical analysis, we strove to provide ample clarification, details about nuances, and contextualisation of the ethical issues that were identified, while avoiding the making of moral judgments and proposing of solutions to these issues. A secondary aim of this report has been to convey the results of SIENNA’s “country studies” of the national academic and popular media debate on the ethical issues in AI and robotics in twelve different EU and non-EU countries, highlighting the similarities and differences between these countries. While these country study results have only formed a minor contribution to the overall identification and analysis of the ethical issues in this report, they are expected to play a larger role in future SIENNA deliverables. This deliverable also provides an overview of the history and state of the art of the academic debate on ethics of AI and robot ethics, and an overview of the current institutional support of these fields.
Public opinion surveys
Tim Hanson. (2020). SIENNA D2.5: Public views on genetics, genomics and gene editing in 11 EU and non-EU countries (Version V4). Zenodo. https://zenodo.org/record/4081155#.YXfQ2p5ByUk
Based on a telephone survey of 1,000 people in each of 11 countries (EU: France, Germany, Greece, the Netherlands, Poland, Spain, Sweden; non-EU: Brazil, South Africa, South Korea, USA), this report provides a snapshot of awareness, understanding and opinions on human genetics and genomics in 2019. Most respondents, in all countries, had at least heard of both genetics or DNA and gene editing in humans. However, there was variation between countries in the proportion of respondents who said they had seen or heard a lot or a fair amount about these areas. The majority of respondents in all countries felt that it was important for people tounderstand more about genetics or DNA. Opinions regarding experimenting on human embryos differed based onthe purpose of the research. Generally, it was thought of as unacceptable to carry out research on human embryos for ‘any purpose’ or to ‘increase human intelligence’. However, the majority of respondents thought thiswould be acceptable if the purpose of this research was to understand ‘how to treat or cure severe health conditions. Respondents were split on whether researchers understood the health risks and benefits of changing an unborn baby’s DNA, as well as on who should be responsible for decision making about how genetic technologies are used. Opinions varied between countries on whether all babies should have their all DNAanalysed at birth. In some countries, a majority agreed with this statement and in other countries, a majority disagreed with the statement. In all countries, a majority of respondents agreed that the termination of pregnancies as a result of genetic tests would lead to disabled people becoming less accepted in society, and that parents would come to feel pressured to have genetic tests on their unborn babies if the practice becomes more common.
Marie Prudhomme. (2020). SIENNA D3.5: Public views of human enhancement technologies in 11 EU and non-EU countries (Version V4). Zenodo. https://zenodo.org/record/4068194#.YXfRPp5ByUk
Based on a telephone survey of 1,000 people in each of 11 countries (EU: France, Germany, Greece, Netherlands, Poland, Spain, Sweden; non-EU: Brazil, South Africa, South Korea, USA), this report provides a snapshot of opinions in 2019 on human enhancement technologies and their impact on society. The report looks at overall feelings towards human enhancement technology as well as at four specific areas: technology to make people live to 120 years old; technology to make people more intelligent, technology to allow a person to choose a particular emotion; and technology to improve people’s moral values. It displays self-reported support and opposition levels for the technology areas, perceptions of who they ought to be available to, as well as perceptions on whether they should be permanent or reversible. The report also looks at perceived responsibility for ensuring the safety of human enhancement technology, as well as perceptions of specific societal impact. It should be noted that human enhancement technology is a complex topic, and that despite cognitive testing and a pilot we cannot fully assess how the terminologies were interpreted by respondents. Therefore, results should be treated as indicative of individuals’ perceptions of the topic areas.
Rebecca Hamlyn. (2020). SIENNA D4.5 Public views on artificial intelligence and robots across 11 EU and non-EU countries. Zenodo. https://zenodo.org/record/4068220#.YXfRmp5ByUk
Based on a telephone survey of 1,000 people in each of 11 countries (EU: France, Germany, Greece, Netherlands, Poland, Spain, Sweden; non-EU: Brazil, South Africa, South Korea, USA), this report provides a snapshot of opinions in 2019 on intelligent machines and their impact on society. Across most countries, most people had heard of robotic and AI applications, though relatively small proportions felt well-informed. In most countries, people anticipated widescale changes over the next 20 years in development of the capabilities of intelligent machines and their effect on societies. People also recognised that these technologies brought risks. In most countries, people were more negative than positive about the potential for robots to take on more human features, and for more widespread use of intelligent machines to widen inequalities and result in people having less control. Despite this, people were on balance more positive than negative about the overall impact of intelligent machines in society. There were wide variations by country, with South Korea and Brazil most positive, and South Africa most polarised. No single country stood as especially negative, though France, Greece, Spain and Germany were all more negative than average on two or more measures.
Citizen panels
Kantar (Public Division). (2019). SIENNA D2.6: Qualitative research exploring public attitudes to human genomics (Version V3). Zenodo. https://zenodo.org/record/4081178#.YXfSN55ByUk
This report presents findings from qualitative research which involved a day-long workshop in five countries comprising three two-hour discussion sessions, with one session focused on human genomics. The overarching aim of this qualitative research was to engage a range of citizens to consider issues raised by the three technology areas. The specific objectives for the genomics sessions were to explore citizen awareness, understanding, views and concerns about genomic sequencing and modification, specifically about: prenatal genome screening, storage and use of whole genome sequences (which was referred to as a “genomic passport” during the workshops to help participant understanding of the concept), somatic genome editing, and germline genome editing. Workshops were held in 5 countries: France, Germany, Poland, Greece, and Spain. Each workshop consisted of 50-53 participants (total n= 253) including a minimum of 10 participants from pre-specified vulnerable groups. This report outlines initial participant associations with the technologies and perceived benefits and concerns for their use, and provides some very early insights into what mitigation measures citizens may want to see in place to address their concerns. This qualitative research was conducted by a social research agency rather than academics. There are a number of important limitations to this research, which include referencing, methodological, sampling and analytical limitations. The results in this report should be read with reference to and in the context of these limitations. The results serve as indicative findings about public attitudes to this technology area and should be treated as a starting point for further academic research and analysis to build from. They should not be read in isolation and should be read with reference to the other reports that have been produced as part of the SIENNA project.
Kantar (Public Division). (2019). SIENNA D3.6: Qualitative research exploring public attitudes to human enhancement technologies (Version V3). Zenodo. https://zenodo.org/record/4081193#.YXfS2Z5ByUk
This report presents findings from qualitative research which involved a day-long workshop in five countries comprising three two-hour discussion sessions, with one session focused on human enhancement. The overarching aim of this qualitative research was to engage a range of citizens to consider issues raised by the three technology areas. The specific objectives for the human enhancement sessions were to briefly explore citizen views and concerns about the following types of enhancement: physical, cognitive, emotional and longevity enhancement. Workshops were held in five countries: France, Germany, Poland, Greece, and Spain. Each workshop consisted of 50-53 participants (total n= 253) including a minimum of 10 participants from pre-specified vulnerable groups. This report outlines initial participant associations with the technologies and perceived benefits and concerns for their use and provides some very early insights into what mitigation measures citizens may want to see in place to address their concerns. This qualitative research was conducted by a social research agency rather than academics. There are several important limitations to this research, which include referencing, methodological, sampling and analytical limitations. The results in this report should be read with reference to and in the context of these limitations. The results serve as indicative findings about public attitudes to this technology area and should be treated as a starting point for further academic research and analysis to build from. They should not be read in isolation and should be read with reference to the other reports that have been produced as part of the SIENNA project. One of the main findings from the research was that participants did not understand that human enhancement technologies refer specifically to improving the capabilities of ‘healthy’ human beings beyond what is deemed ‘normal’. Instead, they often combined references to health treatments and enhancement, seemingly not distinguishing between them. As such, across the four enhancement areas discussed, participants felt that the main benefits of new technologies revolved around healthcare and focused on clinical applications in their discussions. HET areas also raised various concerns, which can be grouped in two categories: individual concerns and societal concerns.
Kantar (Public Division). (2019). SIENNA D4.6: Qualitative research exploring public attitudes to AI and robotics (Version V3). Zenodo. https://zenodo.org/record/4081247#.YXfT9Z5ByUk
This report presents findings from qualitative research which involved a day-long workshop in five countries comprising three two-hour discussion sessions, with one session focused on AI and robots. The overarching aim of this qualitative research was to engage a range of citizens to consider issues raised by the three technology areas. The specific objectives for the AI and robots sessions were to briefly explore citizen views and concerns about the following applications: Artificial Intelligence (AI), Robots, Drones, and Self-driving cars,. Workshops were held in 5 countries: France, Germany, Poland, Greece, and Spain. Each workshop consisted of 50-53 participants (total n= 253) including a minimum of 10 participants from pre-specified vulnerable groups. This report outlines initial participant associations with the technologies and perceived benefits and concerns for their use, and provides some very early insights into what mitigation measures citizens may want to see in place to address their concerns. This qualitative research was conducted by a social research agency rather than academics. There are a number of important limitations to this research, which include referencing, methodological, sampling and analytical limitations. The results in this report should be read with reference to and in the context of these limitations. The results serve as indicative findings about public attitudes to this technology area and should be treated as a starting point for further academic research and analysis to build from. They should not be read in isolation and should be read with reference to the other reports that have been produced as part of the SIENNA project.
Enhancing legal frameworks
Konrad Siemaszko, Rowena Rodrigues, & Santa Slokenberga. (2020). SIENNA D5.6: Recommendations for the enhancement of the existing legal frameworks for genomics, human enhancement, and AI and robotics (Version V2.0). Zenodo.
This report identifies potential changes needed in the existing legal and human rights frameworks (international, EU and national) that might be necessary or desirable to create an environment in which the SIENNA proposals for ethical human genetics and genomics, human enhancement technologies and AI and robotics could be implemented most effectively. It also includes recommendations to improve enforcement and promote the uptake and effectiveness of the existing legislation in these fields. The desired or necessary changes advanced are specified in the report along with related actions, actors responsible for implementing them, their priority levels, implementation challenges and how these could be addressed. The report also discusses the interrelations between ethics and law from the perspective of policymakers.
Ethical frameworks
Mats Hansson, & Solveig Fenet-Chantereau, SIENNA D2.7 Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics. Available at https://www.sienna-project.eu/digitalAssets/801/c_801912-l_1-k_d2.7_ethical-framework-for-genomics_web.pdf.
This SIENNA report 2.7 provides an assessment and integration of key results from SIENNA Reports 2.2, 2,3, 2.4, 2.5 and 2.6. A basic learning from these reports is that one has to acknowledge a need to balance different interests against each other, i.e. important human rights for the protection of basic freedoms against human rights related to the potential of benefiting from scientific advances. The report emphasize that ethics must be an integral reflective part of the conduct of science as well as of clinical practice. A principled approach for such a reflective work is suggested to be part of a framework for ethical assessment both of genomic technologies at large and for research in genetics and genomics. The framework proposes a set of nine ethical principles and questions for ethical self-assessment in genetic and genomics research. For emerging technologies in human genetics and genomics where there is yet not sufficient backing in basic science or animal experiments but a possibility for clinical application within a context of compassionate treatment a special governance structure is suggested with an international organization setting up an institute of a Patient Ombudsman.
Michael Kühler, Nils-Frederic Wagner, & Philip Brey. (2020). SIENNA D3.7: Proposal for an ethical framework for human enhancement (Version V1.0). Zenodo. https://zenodo.org/record/4275579#.YXfVKJ5ByUk.
This report provides proposals towards, and discussions of, a general ethical framework for research on and development of human enhancement technologies (HET). Until now, in spite of the extensive discussions on human enhancement and its ethical aspects, both in academic as well as in popular circles, very few, if any, proposals for ethical guidelines to guide research, development and human enhancement technologies have been made In this deliverable we will consider both the pros and cons of the development of ethical guidelines at this time. We will start by distinguishing between general ethical guidelines and guidelines for specific types of enhancement. We will then present three options for developing ethical guidelines for human enhancement, if the choice is made to do so: self- contained general ethical guidelines, self-contained domain- or field-specific ethical guidelines, and general or field-specific guidelines incorporated into existing guidelines for medical, computer and engineering ethics. We will then discuss more specifically how research ethics committees (RECs) in the medical, computer and engineering sciences could implement guidelines for human enhancement into their existing protocols. Finally, in our annexes, we include two documents: firstly a reference document that RECs could use to inform researchers about ethical issues in human enhancement and how these could be addressed in their self-assessment, and secondly case studies that could further help in understanding what types of issues can arise in connection to HET.
Philip Brey, Philip Jansen, Jonne Maas, Björn Lundgren, Anaïs Resseguier, SIENNA D4.7 An Ethical framework for the development and use of AI and robotics technologies, available at https://www.sienna-project.eu/digitalAssets/801/c_801912-l_1-k_d4.7_ethical-framework-for-ai--robotics_v2.pdf.
This report proposes a comprehensive strategy for ethical AI and robotics. That is, it proposes, at least in outline, a comprehensive set of methods and procedures for developing, deploying and using AI and robotics systems in a way that adheres to ethical principles. The strategy that we propose addresses all actors in society, particularly developers, deployers, users, regulators and educators. It proposes various methods towards more ethical development and use of AI and robotics, such as methods for incorporating ethical considerations into design and development processes, guidelines for ethical deployment and use of AI and robotics systems, standards and certification, governmental policies and regulations, and education and training programs. We conclude this report by looking forward to the steps that still need to be taken to further develop and implement our strategy.
The SIENNA proposals
Lisa Tambornino, Dirk Lanzerath, Philipp Hoevel, & Tom Lindemann. (2021). SIENNA D5.1: Report documenting elements to open and complement operational guidelines for research ethics committees (2.0). Zenodo. https://doi.org/10.5281/zenodo.5541599
Research ethics committees (RECs) are well established to review health-related research projects. Nowadays, ethical assessments by RECs are requested not only for research projects in this field, but also beyond. However, standards and procedures for RECs outside the health-related research fields are still unclear or vague. Therefore, the question arises if and to what extent guidance documents and guidelines for RECs from the health-related field could be helpful to review research projects in other fields. In this report this question was analysed with a special focus on ethical reviews of research projects in the field emerging technologies.
Amal Matar. (2021). SIENNA D5.2: An international code of conduct for data sharing in genomics: A proposal (0.4). Zenodo. https://doi.org/10.5281/zenodo.551917
As part of the SIENNA consortium proposals (WP5), the deliverable proposes an international code of conduct for data sharing in genomics. It builds on results of D 2.3: Survey of REC approaches and codes for genomics, D2.4: Ethical analysis of human genetics and genomics and D5.6: Recommendations for the enhancement of the existing legal frameworks for genomics, human enhancement, and AI and robotics. To draft the proposed code of conduct, we adopted a mix of methods involving a literature review, synthesis of pertinent existing codes of conduct, a workshop of an expert panel and soliciting feedback from SIENNA stakeholders. The deliverable addresses specific concerns and gaps as identified via literature namely; identifiability, broad consent, portability accessibility and return of results, compelled disclosure and lastly withdrawal of consent. Furthermore, we propose mitigation measures as recommended by experts and stakeholders and through synthesis of relevant past codes. The results have been discussed in the light of GDPR which is the most relevant legal framework within the EU.
Anais Resseguier, Philip Brey, Brandt Dainow, & Anna Drozdzewska. (2021). SIENNA D5.4: Multi-stakeholder Strategy and Practical Tools for Ethical AI and Robotics (4.0). Zenodo. https://doi.org/10.5281/zenodo.5536176
After having conducted extensive ethical and legal studies and consulted a wide range of stakeholders on AI and robotics and the social implications of these technologies, the SIENNA project has developed practical ethical guidance documents for AI and robotics. Considering the numerous high-level guidance documents developed in the field over the last couple of years, including the High-Level Expert Group on Artificial Intelligence (AI HLEG), the SIENNA project, together with numerous stakeholders, identified the need for more operational guidance documents. The main objective of these documents is to provide practical ethics guidance to ensure AI and robotics are developed, deployed and used in ways that respect key ethical principles and values. SIENNA has developed six different guidance documents. The first guidance document is a Multi-stakeholder Strategy for Ethical AI and Robotics which is a comprehensive multi-stakeholder framework to ensure ethical AI and robotics. The others are: Ethics by Design and Ethics of Use for AI and Robotics, Industry Education and Buy-In for AI Ethics, Research ethics guidelines for Artificial Intelligence, AI Ethics Education, Training and Awareness Raising and Ethics at Attention to Context: Recommendations for AI ethics.
Konrad Siemaszko, Rowena Rodrigues, Santa Slokenberga (2021). SIENNA D5.6: Recommendations for the enhancement of the existing legal frameworks for genomics, human enhancement, and AI and robotics. https://www.sienna-project.eu/digitalAssets/894/c_894270-l_1-k_sienna_d5.6_recommendations-for-the-enhancement-of-the-existing-legal-frameworks-for-genomics--human-enhancement--and-ai-and-robotics_www.pdf.
This report identifies potential changes needed in the existing legal and human rights frameworks (international, EU and national) that might be necessary or desirable to create an environment in which the SIENNA proposals for ethical human genetics and genomics, human enhancement technologies and AI and robotics could be implemented most effectively. It also includes recommendations to improve enforcement and promote the uptake and effectiveness of the existing legislation in these fields. The desired or necessary changes advanced are specified in the report along with related actions, actors responsible for implementing them, their priority levels, implementation challenges and how these could be addressed. The report also discusses the interrelations between ethics and law from the perspective of policymakers.
Generalising methodology
Philip Brey, Brandt Dainow, Yasemin J. Erden, Amal Matar, Philip Jansen, Rowena Rodrigues, Nicole Santiago, Anais Resseguier,, Lisa Tambornino, Dirk Lanzerath, & Philipp Hoevel. (2021). SIENNA D6.3: Methods for translating ethical analysis into instruments for the ethical development and deployment of emerging technologies (2.0). Zenodo. https://doi.org/10.5281/zenodo.5541539
In this SIENNA deliverable we present five general methods for translating ethical analysis into frameworks and methods for the ethical guidance of new emerging technologies. These are: a multi-stakeholder, co-evolutionary strategy for ethically responsible development, deployment and use of new technology, a step-by-step method for the development of ethics guidelines and ways in which guidelines can be operationalized, a general approach for Ethics by Design, that works for all technology fields, suggestions for ethics and human rights projects on new and emerging technologies for engaging with policy-maker, and finally a method on how research ethics committees can support ethics in new emerging technology research.
Nicole Santiago. (2021). SIENNA D6.4: Methodology to help public research funding organisations reconcile the views and interests of scientists and citizens (4.0). Zenodo. https://doi.org/10.5281/zenodo.5541571
This report presents the SIENNA methodology for public research funding organisations (PRFOs) to identify and address societal concerns in research related to new and emerging technologies. Taking in account PRFOs’ role in the research process and the needs of researchers to have clarity, flexibility, and support, this methodology provides a framework for reconciling researchers’ needs with the concerns of the general public. For the purpose of this methodology, we define ‘societal concerns’ as issues (1) identified by the general public, (2) related to negative impacts or harms, (3) that result – directly or indirectly – from research activities and outputs involving new and emerging technologies. The methodology is divided into three steps: (1) identify and define relevant societal concerns, (2) understand how research creates impact, and (3) address societal concerns and mitigate harm. Each step includes recommendations for PRFOs, as well as specific ideas to implement the recommendation. These recommendations are formulated to provide PRFOs with a practical method and range of tools that can be adapted and implemented, in part or in whole, to address societal concerns related to research involving new and emerging technologies. The methodology was developed with input from previous SIENNA work, including public opinion surveys and citizen panels, and consultation with experts from PRFOs in workshops, individual interviews, and written feedback.
Communications, dissemination, exploitation & sustainability
Rowena Rodrigues, & Anais Resseguier. (2021). SIENNA D6.5: Sustainability plan: options and strategies for promoting the project's legacy (6.0). Zenodo. https://doi.org/10.5281/zenodo.5541514
Josepine Fernow, & Anna Holm. (2021). SIENNA D7.5: Final report on communications (Version 1.0). Zenodo. https://doi.org/10.5281/zenodo.5541505