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- Borry, Pascal, et al.
(författare)
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The challenges of the expanded availability of genomic information : an agenda-setting paper.
- 2018
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Ingår i: Journal of Community Genetics. - : Springer Science and Business Media LLC. - 1868-310X .- 1868-6001. ; 9:2, s. 103-116
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Tidskriftsartikel (refereegranskat)abstract
- Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized diagnosis and personalized drug therapy. Concurrently, provision of direct-to-consumer genetic testing by commercial providers has enabled individuals' direct access to their genomic data. The expanded availability of genomic data is perceived as influencing the relationship between the various parties involved including healthcare professionals, researchers, patients, individuals, families, industry, and government. This results in a need to revisit their roles and responsibilities. In a 1-day agenda-setting meeting organized by the COST Action IS1303 "Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives," participants discussed the main challenges associated with the expanded availability of genomic information, with a specific focus on public-private partnerships, and provided an outline from which to discuss in detail the identified challenges. This paper summarizes the points raised at this meeting in five main parts and highlights the key cross-cutting themes. In light of the increasing availability of genomic information, it is expected that this paper will provide timely direction for future research and policy making in this area.
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| 2. |
- Budin-Ljosne, Isabelle, et al.
(författare)
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Dynamic Consent : a potential solution to some of the challenges of modern biomedical research
- 2017
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Ingår i: BMC Medical Ethics. - : Springer Science and Business Media LLC. - 1472-6939. ; 18
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Tidskriftsartikel (refereegranskat)abstract
- Background: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.
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| 3. |
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| 4. |
- Felzmann, Heike, et al.
(författare)
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Ethical, Legal and Social Issues in Wearable Robotics: Perspectives from the Work of the COST Action on Wearable Robots
- 2020
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Ingår i: INCLUSIVE ROBOTICS FOR A BETTER SOCIETY, INBOTS 2018. - Cham : SPRINGER INTERNATIONAL PUBLISHING AG. - 9783030240745 - 9783030240738 ; , s. 92-97
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Konferensbidrag (refereegranskat)abstract
- The COST Action on Wearable Robots (CA16116) brings together a multidisciplinary, cross-European consortium of experts in Wearable Robotics. Ethical, legal and social (ELS) issues in Wearable Robotics have so far been comparatively underexplored. The ELS Working Group of CA16116 aims to develop a comprehensive understanding of ELS issues in Wearable Robotics, identifying relevant values and ethical, philosophical, legal and social concerns related to the design, deployment and practical use of wearable robots. Here, we present a brief overview of the preliminary findings of a literature search and a series of three expert consultation workshops on ELS issues in Wearable Robotics conducted as part of the work of the Action between October 2017 and October 2018.
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| 5. |
- Kapeller, Alexandra, et al.
(författare)
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A Taxonomy of Ethical, Legal and Social Implications of Wearable Robots: An Expert Perspective
- 2020
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Ingår i: Science and Engineering Ethics. - : SPRINGER. - 1353-3452 .- 1471-5546. ; 26:6, s. 3229-3247
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Tidskriftsartikel (refereegranskat)abstract
- Wearable robots and exoskeletons are relatively new technologies designed for assisting and augmenting human motor functions. Due to their different possible design applications and their intimate connection to the human body, they come with specific ethical, legal, and social issues (ELS), which have not been much explored in the recent ELS literature. This paper draws on expert consultations and a literature review to provide a taxonomy of the most important ethical, legal, and social issues of wearable robots. These issues are categorized in (1) wearable robots and the self, (2) wearable robots and the other, and (3) wearable robots in society.
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| 6. |
- Kapeller, Alexandra, 1992-, et al.
(författare)
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Implementing Ethical, Legal, and Societal Considerations in Wearable Robot Design
- 2021
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Ingår i: Applied Sciences. - : MDPI. - 2076-3417. ; 11:15
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Tidskriftsartikel (refereegranskat)abstract
- Ethical, legal and societal implications (ELSI) in the development of wearable robots (WRs) are currently not explicitly addressed in most guidelines for WR developers. Previous work has identified ELSI related to WRs, e.g., impacts on body and identity, ableism, data protection, control and responsibilities, but translation of these concerns into actionable recommendations remains outstanding. This paper provides practical guidance for the implementation of ELSI in WR design, development and use. First, we identify the need for domain-specific recommendations against the context of current ELSI guidance. We then demonstrate the feasibility and usefulness of taking a domain-specific approach by successively transforming currently identified ELSI into an action-guiding flowchart for integration of ELSI specific to the different stages of WR development. This flowchart identifies specific questions to be considered by WR development teams and suggests actions to be taken in response. By tailoring ELSI guidance to WR developers, centring it on user needs, their relation to others and wider society, and being cognizant of existing legislation and values, we hope to help the community develop better WRs that are safer, have greater usability, and which impact positively on society.
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