This paper opens a critical conversation about the ethics of international bioethics conferencing and proposes principles that commit to being anti-discriminatory, global, and inclusive. We launch this conversation in the Section, Case Study, with a case example involving the International Association of Bioethics’ (IAB’s) selection of Qatar to host the 2024 World Congress of Bioethics. IAB’s choice of Qatar sparked controversy. We believe it also may reveal deeper issues of Islamophobia in bioethics. The Section, Principles for International Bioethics Conferencing, sets (...) forth and defends proposed principles for international bioethics conferencing. The Section, Applying Principles to Site Selection applies the proposed principles to the case example. The Section, Applying Principles Beyond Site Selection addresses other applications of the proposed principles. The Section, Objections responds to objections. We close (in the Section, Conclusion) by calling for a wider discussion of our proposed principles.One-Sentence Capsule Summary: How should bioethicists navigate the ethics of global bioethics conferencing? (shrink)

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. (shrink)

The Buddhist Jātaka tells the tale of a hare lounging under a palm tree who becomes convinced the Earth is coming to an end when a ripe bael fruit falls on its head. Soon all the hares are running; other animals join them, forming a stampede of deer, boar, elk, buffalo, wild oxen, rhinoceros, tigers and elephants, loudly proclaiming the earth is ending.1 In the American retelling, the hare is ‘chicken little,’ and the exaggerated fear is that the sky is (...) falling. The story offers a cautionary tale for considering the trend towards calamity thinking in artificial intelligence (AI). A growing chorus of tech leaders has warned that AI poses existential risk (X-Risk) that could result in the extinction of the human species, the collapse of civilisation, or a colossal decline in human potential and culture. In 2014, Hawking told the Washington Post that AI, ‘could spell the end of the human race’.2 Musk has repeatedly warned about AI’s perils, calling AI, ‘more dangerous than nukes’, recommending colonising Mars to ensure ‘a bolt-hole if AI goes rogue and turns on humanity’,3 and donating 10 million dollars to the Future of Life Institute to jumpstart research on AI’s X-Risk. Gates has stated, ‘I am in the camp…concerned about super intelligence…I agree with … Musk and some others on this and don’t understand why some people are not concerned’.4 Altman, CEO of OpenAI, has fretted that technologies OpenAI was building could endanger humanity—‘even destroying the world as we know it’.5 This paper offers a critical appraisal of the rise of calamity thinking in the scholarly AI ethics literature. It cautions against viewing X-Risk in isolation and highlights ethical considerations sidelined when X-Risk takes centre stage. Section I introduces a working definition of X-Risk, considers its likelihood and …. (shrink)

Cohen’s (2023) mapping exercise of possible bioethical issues emerging from the use of ChatGPT in medicine provides an informative, useful, and thought-provoking trigger for discussions of AI ethic...

We appreciate the helpful commentaries on our paper, ‘AI and the falling sky: interrogating X-Risk’.1 We agree with many points commentators raise, which opened our eyes to concerns we had not previously considered. This reply focuses on the tension many commentators noted between AI’s existential risks (X-Risks) and justice here and now. In ‘Existential risk and the justice turn in bioethics’, Corsico frames the tension between AI X-Risk and justice here and now as part of a larger shift within bioethics.2 (...) They think the field is increasingly turning away from ‘big picture’ questions new technologies raise and focusing on narrower justice concerns of less significance. They compare our paper’s emphasis on justly transitioning to more AI-centred societies with the approach of environmentalists fretting about human protection against climate change while losing sight of the need to protect the planet and all living things. Corsico doubts there is much point to pressing for ‘justice on a dead planet’, so too Corsico questions our concern with just transitions. Presumably, that matters little if intelligent life on Earth is destroyed. Corsico’s recommends bioethicists return to big questions, like: ‘Should we develop AI at all, given AI X-Risk?’. Yet this question is increasingly moot. The genie is already out of the bottle. The Future of Life Institute’s 2023 call for a temporary pause on training AI systems more powerful than ChatGPT fell on deaf ears, in part because freely accessible source codes enable anyone to train systems and create AI applications.3 The focus now must be managing the genie. While we take AI X-Risk seriously, …. (shrink)

Cho and Martinez-Martin (2023) provide a compelling critique of the profound influence that data sourcing for artificial intelligence (AI) has on the healthcare sector. They emphasize the need for...

Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER. A three-round Delphi survey was conducted with a panel of early-career researchers involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRs’ self-perceived level of preparedness to conduct PER ethically. The study (...) was conducted among awardees of the Québec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patients’ roles, expected characteristics of patients, and anticipated challenges. Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales. Between April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds. The majority were between 25 and 44 years old. Panelists’ responses showed PER raises important ethical issues: 1) professionalization of patients involved in research ; 2) adequate remuneration of patients; 3) fair recognition of patients’ experiential knowledge; and 4) tokenism. While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project. If PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall readiness to conduct PER, panelists did not feel adequately prepared to address many of these issues. It is not easy for ECRs to reconcile ethical desiderata and logistical imperatives. Additional research should focus on supporting the responsible conduct of PER, which, if not done, can undermine the credibility and feasibility of the entire PER enterprise. (shrink)

Over the last decade there has been a noticeable increase in attention, on the part of public health scholars and professionals, to the important ethical challenges that arise in the context of public health policy, practice and research. This has arguably been a driver for the development of public health ethics as both a specialized field of study in bioethics and a subject for professional education. But how is PHE taught in public health programs and schools? Are current educational approaches (...) sufficient to provide future professionals with the necessary tools to address the diverse ethical challenges they will encounter? In this article, we examine the international public health and bioethics literatures regarding PHE education in public health programs and schools. Specifically, we 1) summarize the results from studies that describe PHE education in the United States, Europe, Canada and in some developing countries, 2) explore current attitudes and educational approaches toward ethics curricula in public health, and 3) identify and discuss reported barriers to PHE education. We conclude with some general recommendations and a research agenda to guide future work on implementing PHE into different public health programs. (shrink)

This scoping review addresses the issues of responsible conduct of research (RCR) that can arise in the practice of research-creation (RC), an emergent, interdisciplinary, and heterogeneous field at the interface of academic research and creative activities. Little is yet known about the nature and scope of RCR issues in RC, so our study examined three questions: (1) What are the specific issues in RC in relation to RCR? (2) How does the specificity of RC influence the understanding and practice of (...) RCR? (3) What recommendations could help address the issues highlighted in the literature To answer these questions, we conducted a scoping review of the academic literature (n = 181 texts) dealing with RCR in RC. We found that researcher-creators faced some very different RCR challenges in comparison with their colleagues in the rest of academia. Addressing these issues is important for both the RCR and RC communities in order to ensure that the rapid development of this field occurs in line with the norms of RCR which, nonetheless, should be adapted to respect the particularities of RC and allow its contributions to the academic world. (shrink)

There has been increasing attention to financial conflicts of interest (COI) in public health research and policy making, with concerns that some decisions are not in the public interest. One notable problematic area is expert advisory committee (EAC). While COI management has focused on disclosure, it could go further and assess experts’ degree of (in)dependence with commercial interests. We analyzed COI disclosures of members of Québec’s immunization EAC (in Canada) using (In)DepScale, a tool we developed for assessing experts’ level of (...) (in)dependence. We found great variability of independence with industry and that companies with the highest vaccine sales were predominantly associated with disclosed COIs. We argue that EACs can use the (In)DepScale to better assess and disclose the COIs that affect their experts. Going forward our scale could help manage risk and select members who are less conflicted to foster a culture of transparency and trust in advisors and policy-makers. (shrink)

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. (shrink)

Drug exceptional access programs (DEAPs) exist across Canada to address gaps in access to pharmaceuticals. These programs circumvent standard procedures, raising epistemic, economic, social and political issues. This commentary provides insights into these issues by revealing the context and procedures on which these programs depend.

Promotion of prescription drugs may appear to be severely limited in some jurisdictions due to restrictions on direct-to-consumer advertising. However, in most jurisdictions, strategies exist to raise consumer awareness about prescription drugs, notably through the deployment of direct-to-consumer information campaigns that encourage patients to seek help for particular medical conditions. In Canada, DTCI is presented by industry and regulated by Health Canada as being purely informational activities, but their design and integration in broader promotional campaigns raise very similar ethical concerns (...) as those associated with DTCA. Specifically, DTCI can be an effective means of familiarizing the public with the scope and benefits of a particular prescription drug and so, like DTCA, can promote increased patient-consumer demand and thus a problematic rise in the prescribing and use of medications that may be neither the most appropriate nor the most cost-effective. Yet, with DTCI the industry is playing within the existing rules and regulations set by health regulators. To respond appropriately to this regulatory incoherence, we argue that DTCI should be regulated as a type of direct-to-consumer indirect advertising. Even if the case and specific regulations presented here are Canadian, the implications extend to every country that has a partial or total prohibition on DTCA. (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

In their target article, Salloch and Eriksen (2024) argue that a “meaningful process of interrogating” between physicians and patients is the most appropriate way to evaluate medical AI, supporting...

Volume 24, Issue 10, October 2024, Page 85-88.

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. (shrink)

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. (shrink)

Bioethics, like the sixteenth-century commedia dell’arte, is a master of revelation. At the heart of this is a propensity to highlight that what we see is as much truthful and elegant as it is made up of pretence and staging. Must we persuade ourselves that what is false is not false, that what is true is changeable and fragile? Is it possible to serve two masters? Is it possible to get by without antics and disgrace? The Odelet is at once (...) a cryptic portent of the past, present and future of bioethics and a reflection on the capacity of the field (and its actors) to act as a motor for social change. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the universe of (...) patient engagement in research. (shrink)

Les prestataires de soins de santé (HCP) ont joué un rôle central dans l'endiguement de la pandémie de COVID-19. Bien que potentiellement très bénéfique, la mise en oeuvre de tests sérologiques rapides à grande échelle soulève des dilemmes éthiques et affecte la capacité des HCP à travailler dans des conditions optimales. À cet égard, nous appelons l'attention sur les questions éthiques spécifiques et urgentes qui affectent de manière distincte les HCP suite à la disponibilité et à l'éventuelle utilisation obligatoire de (...) tests sérologiques rapides pour COVID-19. (shrink)

Au Québec, la Loi sur l’accès aux documents des organismes publics et sur la protection des renseignements personnels offre une exception en matière de transparence à la plupart des institutions publiques où la recherche en santé publique est menée en leur permettant de ne pas divulguer leurs utilisations de données à caractère personnel (souvent collectées sans le consentement des personnes étudiées). Cette exception est éthiquement problématique en raison de préoccupations importantes (ex. : la protection de la vie privée et les (...) inconvénients potentiels des utilisations secondaires de données) et nous soutenons que tous ceux qui mènent des recherches doivent être transparents et responsables du travail qu’ils accomplissent dans l’intérêt public. (shrink)

Volume 25, Issue 3, March 2025, Page 132-135.