Vincent Couture

Bioethics experts played a key role in ensuring a coherent ethical response to the COVID-19 pandemic in the fields of healthcare, public health, and scientific research in Canada. In the province of Quebec, a group of academic and practicing bioethicists met periodically in the early months of the pandemic to discuss approaches and solutions to ethical dilemmas encountered during the crisis. These meetings created the opportunity for a national survey of bioethics practitioners from different fields. The survey, in which forty-five Canadian bioethics practitioners (clinical ethicists, ethicist members of REBs and government health policy ethicists, or any bioethicist practicing outside of academia) participated, explored their concerns, challenges and opportunities during the first wave of the pandemic, with the objective of informing bioethics research about the difficulties experienced by bioethicists “in the field”. Participants reported increased stress levels, increased workloads, and a greater proportion of their work being devoted to public health ethics. Most of their concerns focused on groups other than themselves, such as health professionals, patients, research participants, and people in vulnerable socio-economic situations. An optimism about the future of bioethics was noted due to an increased awareness of the importance of bioethics by the public and by health and research institutions.

Imagine that you are part of the editorial board of a young bioethics journal committed to publishing open access (OA) and to ensuring accessibility to high quality and innovative scholarship. To support junior and interna- tional scholars who might not otherwise find places for their work in the leading Western bioethics journals, you do not charge author fees. Imagine also that you have no financial resources to pay for a professional website, auto- mated submissions manager, or even a part-time coordina- tor: Your government has cut all grants for journals, you cannot go to industry for private funding because of the evident risk of apparent conflicts of interest, and your strapped-for-cash institution cannot afford to offer you any support. If one of the major publishers were to approach you to sign a deal, the temptation would be strong to accept. However, this would likely mean putting aside your ideals: It would be impossible to stay a “Green OA” publication (i.e., free of author publication charges) or supportive of junior and international scholars (because of pressures to “increase credibility” through artificially high rejection rates, for example).

It has become a truism that the ethics of artificial intelligence (AI) is necessary and must help guide technological developments. Numerous ethical guidelines have emerged from academia, industry, government and civil society in recent years. While they provide a basis for discussion on appropriate regulation of AI, it is not always clear how these ethical guidelines were developed, and by whom. Using content analysis, we surveyed a sample of the major documents (_n_ = 47) and analyzed the accessible information regarding their methodology and stakeholder engagement. Surprisingly, only 38% report some form of stakeholder engagement (with 9% involving citizens) and most do not report their methodology for developing normative insights (15%). Our results show that documents with stakeholder engagement develop more comprehensive ethical guidance with greater applicability, and that the private sector is least likely to engage stakeholders. We argue that the current trend for enunciating AI ethical guidance not only poses widely discussed challenges of applicability in practice, but also of transparent development (as it rather behaves as a black box) and of active engagement of diversified, independent and trustworthy stakeholders. While most of these documents consider people and the common good as central to their telos, engagement with the general public is significantly lacking. As AI ethics moves from the initial race for enunciating general principles to more sustainable, inclusive and practical guidance, stakeholder engagement and citizen involvement will need to be embedded into the framing of ethical and societal expectations towards this technology.

How to engage the public in a reflection on the most pressing ethical issues of our time? What if part of the solution lies in adopting an interdisciplinary and collaborative strategy to shed light on critical issues in bioethics? An example is Art + Bioéthique, an innovative project that brought together bioethicists, art historians and artists with the aim of expressing bioethics through arts in order to convey the “sensitive” aspect of many health ethics issues. The aim of this project was threefold: 1) to identify and characterize mechanisms for the meeting of arts and bioethics; 2) to experiment with and co-construct a dialogue between arts and bioethics; and 3) to initiate a public discussion on bioethical issues through the blending of arts and bioethics. In connection with an exhibition held in March 2016 at the Espace Projet, a non-profit art space in Montréal, the project developed a platform that combined artworks, essays and cultural & scientific mediation activities related to the work of six duos of young bioethics researchers and emerging artists. Each duo worked on a variety of issues, such as the social inclusion of disabled people, the challenges of practical applications of nanomedicine and regenerative medicine, and a holistic approach to contemporary diseases. This project, which succeeded in stimulating an interdisciplinary dialogue and collaboration between bioethics and arts, is an example of an innovative approach to knowledge transfer that can move bioethics reflection into the public space.

Cross-border reproductive care (CBRC) can be defined as the movement from one jurisdiction to another for medically assisted reproduction (MAR). CBRC raises many ethical concerns that have been addressed extensively. However, the conclusions are still based on scarce evidence even considering the global scale of CBRC. Empirical ethics appears as a way to foster this ethical reflection on CBRC while attuning it with the experiences of its main actors. To better understand the ‘in and out’ situation of CBRC in Canada, we conducted an ethnographic study taking a ‘critically applied ethics’ approach. This article presents a part of the findings of this research, obtained by data triangulation from qualitative analysis of pertinent literature, participant observation in two Canadian fertility clinics and 40 semidirected interviews. Based on participants’ perceptions, four themes emerged: (1) inconsistencies of the Canadian legal framework; (2) autonomy and the necessity to resort to CBRC; (3) safety and the management of CBRC individual risks; and (4) justice and solidarity. The interaction between these four themes highlights the problematic of ‘reproductive outsourcing’ that characterised the Canadian situation, a system where the controversial aspects of MAR are knowingly pushed outside the borders.

How to engage the public in a reflection on the most pressing ethical issues of our time? What if part of the solution lies in adopting an interdisciplinary and collaborative strategy to shed light on critical issues in bioethics? An example is Art + Bioéthique, an innovative project that brought together bioethicists, art historians and artists with the aim of expressing bioethics through arts in order to convey the “sensitive” aspect of many health ethics issues. The aim of this project was threefold: 1) to identify and characterize mechanisms for the meeting of arts and bioethics; 2) to experiment with and co-construct a dialogue between arts and bioethics; and 3) to initiate a public discussion on bioethical issues through the blending of arts and bioethics. In connection with an exhibition held in March 2016 at the Espace Projet, a non-profit art space in Montréal, the project developed a platform that combined artworks, essays and cultural & scientific mediation activities related to the work of six duos of young bioethics researchers and emerging artists. Each duo worked on a variety of issues, such as the social inclusion of disabled people, the challenges of practical applications of nanomedicine and regenerative medicine, and a holistic approach to contemporary diseases. This project, which succeeded in stimulating an interdisciplinary dialogue and collaboration between bioethics and arts, is an example of an innovative approach to knowledge transfer that can move bioethics reflection into the public space.

Research Ethics, Volume 18, Issue 2, Page 126-131, April 2022. Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board to conduct a study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation. In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine.

Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board to conduct a study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation. In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine.