Deliverables
A review of existing ethical theories and approaches regarding human enhancement and an ethical impact assessment of current and future ethical issues, both regarding human enhancement in general and in relation to specific technologies, domains and applications.
Report of the human enhancement citizen panelsA report of the discussions and outcomes of panels of citizens in five EU countries on the social and ethical issues raised by human enhancement.
Methodology to help public research funding organisations reconcile the views and interests of scientists and citizensThis report will outline a general methodology that could be used by public research funding organisations and similar organizations to help reconcile the needs of scientific researchers and the legitimate concerns of citizens
Ethical assessment of HMIA review of existing ethical theories and approaches regarding human-machine interaction technologies and an ethical impact assessment of current and future ethical issues, both regarding human-machine interaction technologies in general and in relation to specific technologies, domains and applications.
Proposal for an ethical framework for genomicsAn ethical framework for the assessment of genomics technologies that takes into account the views and judgements of ethicists, scientists, CSOs and citizens.
Report of the HMI citizen panelsA report of the discussions and outcomes of panels of citizens in five EU countries on the social and ethical issues raised by human-machine interaction technologies.
Methods for translating ethical analysis into instruments for the ethical development and deployment of emerging technologiesA report documenting generalized methods for developing codes and operational guidelines, ethics by Design approaches, policy guidance, guidance documents for research ethics committees and other methods in support of the ethical development and deployment of emerging technologies
Survey of REC approaches and codes for HMI (Formerly EUREC)A survey report that determines for research ethics protocols and professional ethics codes in different EU countries and internationally to what extent and how they refer explicitly or implicitly to genomics technologies, and that surveys the opinions of representatives of research ethics committees to determine awareness of these technologies and the approach that they take and would like to take to them.
Report of the HMI societal acceptance and awareness surveysA report with results and analysis of telephone surveys in 11 countries to assess the level of societal acceptance and awareness of human-machine interaction technologies.
Analysis of legal and human rights requirements for human enhancement in and outside the EUA report documenting and critically assessing the legal, including human rights, requirements applicable to human enhancement, including an analysis of EU and international norms and regional legal orders, an analysis of human rights norms and ways in which human rights may be affected by human enhancement technologies, and an analysis of national laws in comparison to international and regional norms and human rights standards.
Report of the genomics societal acceptance and awareness surveysA report with results and analysis of telephone surveys in 11 countries to assess the level of societal acceptance and awareness of genomics technologies.
Interim report on communicationsAn interim report on outreach measurements as defined in the communication and dissemination plan.
Report on adapting methods for ethical analysis of emerging technologiesA report that generalizes from the ethical methods developed and used in WPs1, 2, 3 and 4 to arrive at general methods for the ethical analysis of emerging technologies, with special attention to the incorporation of stakeholder consultation into ethical analysis and to the integration of ethical impact assessments with social and economic impact assessments, human rights assessments, and legal analysis..
Analysis of the legal and human rights requirements for HMI in and outside the EUA report documenting and critically assessing the legal, including human rights, requirements applicable to human-machine interaction, including an analysis of EU and international norms and regional legal orders, an analysis of human rights norms and ways in which human rights may be affected by human-machine interaction technologies, and an analysis of national laws in comparison to international and regional norms and human rights standards.
Ethical assessment of genomicsA review of existing ethical theories and approaches regarding genomics technologies and an ethical impact assessment of current and future ethical issues, both regarding genomics in general and in relation to specific technologies, domains and applications.
State of the art review of genomicsReport of the state of the art of genomics, including a demarcation and brief history of the field, the basic scientific and commercial developments, and their present and anticipated social and economic impacts.
State-of-the-art review of human machine interactionsReport of the state of the art of human machine interaction, including a demarcation and brief history of the field, the basic scientific and commercial developments, and their present and anticipated social and economic impacts.
Report of the Genomics citizen panelsA report of the discussions and outcomes of panels of citizens in five EU countries on the social and ethical issues raised by genomics technologies.
Recommendations for the enhancement of the existing EU and international legal frameworkA report with recommendations for the enhancement of the existing EU and international legal framework, especially in relation to the three investigated technologies.
Report on adapting methods for legal analysis of emerging technologiesA report analyzing the possibilities for the general application of our approach for legal and human rights analysis, with reference to other types of future and emerging technologies, and outlining a refined methodology, elaborating and adapting the approach developed in Task 1.2.
Proposal for an ethical framework for human enhancementAn ethical framework for the assessment of human enhancement technologies that takes into account the views and judgements of ethicists, scientists, CSOs and citizens.
The consortium’s methodological handbook (outlining its detailed approach)An handbook documenting the SIENNA approaches for ethical analysis, legal and human rights analysis, the study of societal acceptance and awareness, stakeholder analysis and public engagement approach, and the analysis and development of research ethics protocols and professional ethical codes (tasks 1.1 through 1.5), as well as their benefits, limitations and challenges.
Sustainability plan: options and strategies for promoting the project's legacyThis report will identify and explore the various options and strategies for promoting beyond the project's timespan the project's codes of conduct, other research outputs and networks developed during the project’s stakeholder engagement activities.
Proposal for an ethical framework for HMIAn ethical framework for the assessment of machine-interaction technologies that takes into account the views and judgements of ethicists, scientists, CSOs and citizens.
Central elements of a code of responsible conduct for researchers in genomicsA report with a proposal for central elements in a code of responsible conduct for researchers in genomics.
Methods for promoting ethics in human enhancementA report with a proposal for ethical guidelines for human enhancement, as well as other proposals for supporting the ethical development and deployment of human enhancement technologies
Report documenting elements to open and complement operational guidelines for research ethics committeesA report that examines the scope of existing operational guidelines for research ethics committees in the biomedical field and demonstrates how these operational guidelines could be extended to other research areas.
Survey of REC approaches and codes for human enhancement (Formerly EUREC)A survey report that determines for research ethics protocols and professional ethics codes in different EU countries and internationally to what extent and how they refer explicitly or implicitly to human enhancement , and that surveys the opinions of representatives of research ethics committees to determine awareness of these technologies and the approach that they take and would like to take to them.
Survey of REC approaches and codes for genomicsA survey report that determines for research ethics protocols and professional ethics codes in different EU countries and internationally to what extent and how they refer explicitly or implicitly to genomics technologies, and that surveys the opinions of representatives of research ethics committees to determine awareness of these technologies and the approach that they take and would like to take to them.
Multi-stakeholder strategy and practical tools for ethical AI and roboticsA report with a multistakeholder strategy for ethical AI and robotics, including proposals for practical tools for supporting ethics, including, but not limited to, a research ethics framework, an Ethics by Design approach, proposals for ethics education, training and awareness raising, a proposal for humanities and social sciences research to supplement AI ethics, as well as other proposals for supporting the ethical development and deployment of human enhancement technologies
Final report on communicationsA final report on outreach measurements as defined in the communication and dissemination plan.
Report of the human enhancement societal acceptance and awareness surveysA report with results and analysis of telephone surveys in 11 countries to assess the level of societal acceptance and awareness of human enhancement.
State-of-the-art review of human enhancementReport of the state of the art of human enhancement, including a demarcation and brief history of the field, the basic scientific and commercial developments, and their present and anticipated social and economic impacts.
Analysis of the legal and human rights requirements for genomics in and outside the EUA report documenting and critically assessing the legal, including human rights, requirements applicable to genomics, including an analysis of EU and international norms and regional legal orders, an analysis of human rights norms and ways in which human rights may be affected by genomics technologies, and an analysis of national laws in comparison to international and regional norms and human rights standards.
Communication and dissemination planA report that outlines a communication and dissemination strategy and includes an activity plan for the first 12 months. This plan will be updated regularly.
A global press-release, to be issued by UT, followed by local releases from other partners.
Website launchDelivery of a website for SIENNA.
Publications
Author(s):
Emilia Niemiec, Heidi Carmen Howard
Published in:
The CRISPR Journal, Issue 3/1, 2020, Page(s) 52-63, ISSN 2573-1599
Publisher:
Mary Ann Liebert, Inc., publishers
DOI:
10.1089/crispr.2019.0043
Author(s):
Emilia Niemiec, Heidi Carmen Howard
Published in:
Computational and Structural Biotechnology Journal, Issue 18, 2020, Page(s) 887-896, ISSN 2001-0370
Publisher:
Elsevier
DOI:
10.1016/j.csbj.2020.03.014
Author(s):
Aviad E. Raz, Emilia Niemiec, Heidi C. Howard, Sigrid Sterckx, Julian Cockbain, Barbara Prainsack
Published in:
New Genetics and Society, Issue 39/4, 2020, Page(s) 459-482, ISSN 1463-6778
Publisher:
Carfax Publishing Ltd.
DOI:
10.1080/14636778.2020.1755636
Author(s):
Anais Resseguier, Rowena Rodrigues
Published in:
Open Research Europe, Issue 1, 2021, Page(s) 27, ISSN 2732-5121
Publisher:
Open Research Europe
DOI:
10.12688/openreseurope.13260.1
Author(s):
Rowena Rodrigues
Published in:
Journal of Responsible Technology, Issue 4, 2020, Page(s) 100005, ISSN 2666-6596
Publisher:
Elsevier
DOI:
10.1016/j.jrt.2020.100005
Author(s):
Marcelo de Araujo
Published in:
Philosophies, Issue 5/3, 2020, Page(s) 20, ISSN 2409-9287
Publisher:
MDPI
DOI:
10.3390/philosophies5030020
Author(s):
Anaïs Rességuier, Rowena Rodrigues
Published in:
Big Data & Society, Issue 7/2, 2020, Page(s) 205395172094254, ISSN 2053-9517
Publisher:
SAGE Journals
DOI:
10.1177/2053951720942541
Author(s):
Santa Slokenberga and Heidi Carmen Howard
Published in:
Förvaltningsrättslig tidskrift, Issue 2019 2, 2019, Page(s) 199-222, ISSN 0015-8585
Publisher:
Eddy.se ab
Author(s):
Emilia Niemiec, Heidi Carmen Howard
Published in:
Applied Genomics and Public Health, Issue [ed] George P. Patrinos, San Diego: Academic Press, 2020, 1, p. 243-257, 2020, Page(s) 243-257, ISBN 9780128136959
Publisher:
Elsevier
DOI:
10.1016/b978-0-12-813695-9.00013-3
Author(s):
Maria Canellopoulou-Bottis
Published in:
SSRN Electronic Journal, Issue Posted 22 Dec 2018, 2018, Page(s) 1-20, ISSN 1556-5068
Publisher:
ELSEVIER
DOI:
10.2139/ssrn.3295632
Author(s):
Josepine Fernow, Inigo De Miguel Beriain, Philip Brey, Bernd Stahl
Published in:
ORBIT Journal, Issue 2019/1, 2019, Page(s) 1-8, ISSN 2515-8562
Publisher:
Orbit
DOI:
10.29297/orbit.v2019i1.115
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