Skip to main content

Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact

Periodic Reporting for period 2 - SIENNA (Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact)

Okres sprawozdawczy: 2018-10-01 do 2019-09-30

The SIENNA project is an European Commission-funded project in the Horizon 2020 programme with a budget of € 4.0 million and a running time of three and a half years (1 October 2017 – 1 April 2021). It involves a consortium of thirteen organizations from the European Union and other parts of the world including North America, South America, Africa and Asia. It aims to develop, in collaboration with relevant stakeholders, ethical, legal and human-rights analysis of three technology areas with significant anticipated socioeconomic impact, in order to ensure enhanced consideration of ethical and human rights issues for these technologies:

• human genomics
• human enhancement
• artificial intelligence & robotics

The precise objectives of the SIENNA project are the following:

Objective 1: To develop ethical frameworks based on social, ethical and legal analyses that address major present and future ethical issues in (a) human genomics, (b) human enhancement and (c) AI & robotics. These frameworks will take into account existing legal and ethical frameworks as well as stakeholder and public opinion, including the public’s acceptance and awareness of these technologies.

Objective 2: To translate and adapt these ethical frameworks, in collaboration with relevant stakeholders, so as to produce four practical tools and resources for each technology: (a) operational guidelines for research ethics committees for these technologies, (b) codes of responsible conduct for researchers who develop these technologies, (c) proposals for revisions of existing ethical frameworks, and (d) proposals for revisions of existing legal frameworks, all of which should have acceptance and approval of relevant stakeholders.

Objective 3: To generalize the approaches for developing, translating and adapting ethical frameworks that were established in (1) and (2) so that they can be applied to other new and emerging technologies, and to obtain acceptance from relevant stakeholders for these generalised approaches.

This project is important to society because it considers the ethical and human rights aspects of three major emerging technology areas that will have important socio-economic impact in the European Union and the rest of the world. It is one of very few projects with this focus and the ability to influence EU policy and practices regarding the development and use of these three technologies. It will aim to foster implementation of high ethics standards at EU and international level for the three technology areas through general ethical guidelines for society, codes of responsible conduct for researchers who develop the technologies and end users who use them, and will suggest improvements to existing ethical and legal frameworks. The project will also provide new approaches for developing, translating and adapting ethical frameworks for new and emerging technologies, and such approaches now hardly exist and are needed. The project is unique in its breadth, its international scope, its policy implications, its use of innovative new methodologies for analysis and the formulation of new tools.
During the first 24 months of the project (October 2017 - September 2019), the following tasks were completed or are in progress:

a) The establishment of the approach and methodology for the project (work package 1, deliverables D1.1 D1.2; completed; with updates to come at month 18)
b) An overview of the state-of-the art in the three technology fields including a broad socio-economic impact assessment (tasks 2.1 3.1 and 4.1; D2.1 D3.1 D4.1; completed)
c) An analysis of existing ethical codes and research ethics protocols in the three technology fields (tasks 2.3 3.3 and 4.3; D2.3 D3.3 D4.1; completed)
d) An analysis of existing legislation in the three technology fields (tasks 2.2 3.2 4.2; D2.2 D3.2 D4.2; completed)
e) An analysis of ethical issues in the three technology fields (tasks 2.4 3.4 and 4.4; D2.4 D3.4 D4.4; completed)
f) A survey of societal acceptance and awareness (tasks 2.5 3.5 and 4.5; D2.5 D3.5 D4.5; completed)
g) Panels of citizens to assess societal acceptance and awareness (tasks 2.6 3.6 and 4.6; D2.6 D3.6 D4.6; completed)
h) Proposal for an ethical framework (tasks 2.7 3.7 and 4.7) (in progress)
i) Developing elements to open and complement operational guidelines for research ethics committees (task 5.1) (in progress)
j) The establishment of the communications strategy and relevant communications actions based on the first two year's results (tasks 7.1 through 7.6; D7.1 D7.2 D7.3 and D7.4 completed, tasks are ongoing)
k) Determination and fulfillment of the ethics requirements and data management plan (tasks 8.3 and 8.4; D8.3 and 8.4; deliverables completed and tasks ongoing)

All objectives for the first 24 months have been met, the deliverables were completed, and milestones were met.
The SIENNA project will produce many unique reports for which no similar publications exist. It will possibly be the first project to:

- Provide an extensive overview of existing ethics codes and research ethics protocols for human genomics, human enhancement and AI & Robotics in EU member states as well as internationally.
- Provide a comparative legal analysis of legislation for the three fields in EU member states and internationally, especially in relation to human rights issues.
- Perform foresight analyses covering human genomics, human enhancement and AI & Robotics and utilize these foresight analysis for the identification of potential future ethical issues in these fields
- Perform comprehensive ethical analyses of the three fields, covering both fundamental ethical issues and ethical issues in relation to specific products and application domains, and covering both present and potential future developments
- Conduct quantitative surveys in 11 countries, including in EU member states (7 countries), and one country each from North America, South America, Africa and Asia. the USA, to obtain public’s awareness and views of the three technology areas.
- Conduct expanded focus groups also referred to in the submission as “panels of citizens” in five EU member states in order to obtain qualitative data to further understand the views of the general publics on these three fields of technologies
- Develop ethical frameworks, guidelines and research ethics protocols for the three fields that include input from a wide range of stakeholders as well as consultations of the public
- Develop generalized methods for legal analysis, ethical analysis, and the development of ethical frameworks and guidelines and research ethics protocols for emerging technologies

The first six items on this list have now been completed, and we have started dissemination of our results. We are now moving into the stage of developing actual proposals, in the form of ethics guidelines, ethics tools of various types, and policy proposals. The impact of our work is starting to become evident, in that our stakeholders and others who have accessed our work have expressed interest in what we do, and some have proposed further collaboration. Most of the project's impacts still lie in the future, however, since they depend on the uptatke of the guidelines, tools and proposals that we are currently developing.
SIENNA logo and illustration