National Ethics Advisory Bodies in the Emerging Landscape of Responsible Research and Innovation

Mali, Franc; Pustovrh, Toni; Groboljsek, Blanka; Coenen, Christopher

doi:10.1007/s11569-012-0157-z

Cited by 17 publications

(5 citation statements)

References 41 publications

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“…In this paper we took stock of the current landscape of National Ethics Committees (NECs) worldwide, their key functions, and what areas of bioethics they deliberated on from 1975 to the present. While some information on the constitution and activities of NECs can be found for specific countries or regions [ 2 , 10 – 13 ], very few studies examine these on a global scale. Our study complements existing platforms such as the UNESCO Global Ethics Observatory (GEObs) [ 14 ], which contains a range of resources on global bioethics, including information on various types of ethics entities with various forms, affiliations, and functions from different countries and regions of the world, as well as a collection of legislative documents, guidelines, and codes of conduct by country.…”

Section: Discussionmentioning

confidence: 99%

Taking stock of the availability and functions of National Ethics Committees worldwide

et al. 2021

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Background National Ethics Committees (NECs) offer important oversight and guidance functions and facilitate public debate on bioethical issues. In an increasingly globalized world where technological advances, multi-national research collaborations, and pandemics are creating ethical dilemmas that transcend national borders, coordination and the joining of efforts among NECs are key. The purpose of this study is to take stock of the current NEC landscape, their varying roles and missions, and the range of bioethical topics on which they deliberated since their inception. Methods Data on the availability, functions, and ethical deliberations (publications) of NECs globally were gathered through a systematic search of NEC websites and through contacts known to the authors. The search was conducted in English, French, and Spanish. The data abstraction was done in Excel and included the NEC’s country, region, functions, and deliberations on bioethical issues. Deliberation topics were classified into thematic categories through an iterative process of regrouping to arrive at the main set of themes. Results 124 NECs in 100 countries were identified. 44% of the NECs are in Europe and 47% are in high-income countries. Out of the 1108 retrieved publications, 40% were on bioethics in the context of research, followed by the clinic (28%) and public health issues (22%). The top five topics of these publications were: research ethics (124; 9%), genetics and genomics (62; 6%), organ transplantation (58; 5%), assisted reproductive technology (49; 4%), and end of life (36; 3%). Conclusion Our study makes an important contribution to understanding the current interests and functions of NECs and the range of their bioethics deliberations. By making the data publicly available through this publication, it allows users to conduct tailored analyses and queries based on their interests, and to seek and strengthen collaboration and exchange. It also makes the case for the fruitfulness of developing and maintaining a global repository of current and new deliberations to more effectively advance this field for the greater good of humanity, research, and public health.

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Section: Discussionmentioning

confidence: 99%

Taking stock of the availability and functions of National Ethics Committees worldwide

et al. 2021

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“…In this way, the EAB had a role to play in ensuring ethics was a consideration for those involved in the governance of the app and had some influence on decision-making. However, on the other hand, there was a sense that even though the EAB had a published terms of reference (NHSX, 2020), at times its members felt the board's role was poorly defined-a point made elsewhere about other EABs more generally (Mali et al, 2012). This meant it was difficult to accommodate key ethics principles into governance processes, which sometimes suffered from little accountability.…”

Section: Discussionmentioning

confidence: 99%

Bringing ethics into governance: the case of the UK COVID-19 contact tracing app

Samuel

Lucivero

2021

IJHG

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PurposeIn April 2020, it was announced that NHSX, a unit of the UK National Health Service (NHS) responsible for digital innovation, was developing a contact tracing app that would offer a digital solution to managing the COVID-19 pandemic. Despite the urgency with which the app was developed, a clear commitment was made to designing the technology in a way that enshrined key ethical principles, and an ethics advisory board (EAB) was established to provide timely advice, guidance and recommendations on associated ethical issues. Alongside this, there were extensive criticisms of how NHSX adhered to ethical principles in the handling of the app development-criticisms that require empirical exploration. This paper explores how ethics was incorporated into decision-making during governance processes associated with the development of app.Design/methodology/approachInterviews were conducted with those involved in the app's development/governance, those with a consulting role associated with the app, or those who sat on the EAB.FindingsThe EAB fulfilled an important role by introducing ethical considerations to app developers. Though at times, it was difficult to accommodate key ethics principles into governance processes, which sometimes suffered from little accountability.Originality/valueWhile several articles have provided overviews of ethical issues, or explored public perceptions towards contact tracing apps, to the best the authors, knowledge this is the first empirical piece analysing ethics governance issues via stakeholder interviews.

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“…The discussion of ideology in RRI is scattered throughout the sample and is mostly found in the context of engagement, as actors or stakeholders involved in participatory action either potentially carry ideological biases that contribute to the low productivity of engagement practices [18,57], or can be infected by the ideological aims of RRI [13]. Also, risk and scenario anticipation, namely in fields of emerging science and technology with high uncertainty levels, appear to be rich in ideological visions of the future [15,17]. However not representing a trending topic in the literature, ideological factors may constitute significant obstructions to the arrival of a consensus on the definition of RRI.…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Emerging patterns in the academic literature on responsible research and innovation

Loureiro

Conceição

2019

Technology in Society

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European societal challenges tackled by the Horizon 2020 [11]. Formalized by the European Council with the declaration of Rome in November 2014, RRI was broadly defined as 'the on-going process of aligning research and innovation to the values, needs and expectations of society'. For such purpose it requires that all stakeholders, including civil society, take shared responsibility for the processes and outcomes of

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National Ethics Advisory Bodies in the Emerging Landscape of Responsible Research and Innovation

Cited by 17 publications

References 41 publications

Taking stock of the availability and functions of National Ethics Committees worldwide

Taking stock of the availability and functions of National Ethics Committees worldwide

Bringing ethics into governance: the case of the UK COVID-19 contact tracing app

Emerging patterns in the academic literature on responsible research and innovation

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