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)

Bayefsky and Berkman argue in favor of evidence-based policy development for expanded prenatal genetic testing. They propose to identify what kinds of information pregnant persons, their par...

In "Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?," Bayefsky and Berkman argue in favor of establishing three categorie...

Harvey and Gurvir’s Law is a bill proposed to the Legislative Assembly of Ontario (Canada) to reduce stigma and bias associated with Down syndrome, by developing and disseminating quality information about Down syndrome in the context of prenatal testing.

In “Non-invasive prenatal testing for ‘non-medical’ traits: Ensuring consistency in ethical decision-making,” Bowman-Smart et al. (2023) lay out arguments both for and against the potential use of...

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)

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)