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Objective: Voice as a health biomarker using artificial intelligence (AI) is gaining momentum in research. The noninvasiveness of voice data collection through accessible technology (such as smartphones, telehealth, and ambient recordings) or within clinical contexts means voice AI may help address health disparities and promote the inclusion of marginalized communities. However, the development of AI-ready voice datasets free from bias and discrimination is a complex task. The objective of this study is to better understand the perspectives of engaged and interested stakeholders regarding ethical and trustworthy voice AI, to inform both further ethical inquiry and technology innovation., Methods: A questionnaire was administered to voice AI experts, clinicians, scholars, patients, trainees, and policy-makers who participated at the 2023 Voice AI Symposium organized by the Bridge2AI-Voice AI Consortium. The survey used a mix of Likert scale, ranking and open-ended questions. A total of 27 stakeholders participated in the study., Results: The main results of the study are the identification of priorities in terms of ethical issues, an initial definition of ethically sourced data for voice AI, insights into the use of synthetic voice data, and proposals for acting on the trustworthiness of voice AI. The study shows a diversity of perspectives and adds nuance to the planning and development of ethical and trustworthy voice AI., Conclusions: This study represents the first stakeholder survey related to voice as a biomarker of health published to date. This study sheds light on the critical importance of ethics and trustworthiness in the development of voice AI technologies for health applications., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

This article describes the Cell Maps for Artificial Intelligence (CM4AI) project and its goals, methods, standards, current datasets, software tools , status, and future directions. CM4AI is the Functional Genomics Data Generation Project in the U.S. National Institute of Health's (NIH) Bridge2AI program. Its overarching mission is to produce ethical, AI-ready datasets of cell architecture, inferred from multimodal data collected for human cell lines, to enable transformative biomedical AI research.

Background: Alternative cancer clinics, who provide treatment associated with earlier time to death, actively seek to create favorable views of their services online. An unexplored means where alternative cancer clinics can shape their appeal is their Google search results., Methods: We retrieved the Google listing and Google reviews of 47 prominent alternative cancer clinics on August 22, 2022. We then conducted a content analysis to assess the information cancer patients are faced with online., Results: Google listings of alternative treatment providers rarely declared the clinic was an alternative clinic versus a conventional primary cancer treatment provider (12.8% declared; 83.0% undeclared). The clinics were highly rated (median, 4.5 stars of 5). Reasons for positive reviews included treatment quality ( n  = 519), care ( n  = 420), and outcomes ( n  = 316). 288 reviews presented the clinics to cure or improve cancer. Negative reviews presented alternative clinics to financially exploit patients with ineffective treatment ( n  = 98), worsen patients' condition ( n  = 72), provide poor care ( n  = 41), and misrepresent outcomes ( n  = 23)., Conclusions: The favorable Google listing and reviews of alternative clinics contribute to harmful online ecosystems. Reviews provide compelling narratives but are an ineffective indicator of treatment outcomes. Google lacks safeguards for truthful reviews and should not be used for medical decision-making., Competing Interests: Competing interestsThe authors declare no competing interests., (© The Author(s) 2024.)

Artificial intelligence (AI)-powered chatbots have the potential to substantially increase access to affordable and effective mental health services by supplementing the work of clinicians. Their 24/7 availability and accessibility through a mobile phone allow individuals to obtain help whenever and wherever needed, overcoming financial and logistical barriers. Although psychological AI chatbots have the ability to make significant improvements in providing mental health care services, they do not come without ethical and technical challenges. Some major concerns include providing inadequate or harmful support, exploiting vulnerable populations, and potentially producing discriminatory advice due to algorithmic bias. However, it is not always obvious for users to fully understand the nature of the relationship they have with chatbots. There can be significant misunderstandings about the exact purpose of the chatbot, particularly in terms of care expectations, ability to adapt to the particularities of users and responsiveness in terms of the needs and resources/treatments that can be offered. Hence, it is imperative that users are aware of the limited therapeutic relationship they can enjoy when interacting with mental health chatbots. Ignorance or misunderstanding of such limitations or of the role of psychological AI chatbots may lead to a therapeutic misconception (TM) where the user would underestimate the restrictions of such technologies and overestimate their ability to provide actual therapeutic support and guidance. TM raises major ethical concerns that can exacerbate one's mental health contributing to the global mental health crisis. This paper will explore the various ways in which TM can occur particularly through inaccurate marketing of these chatbots, forming a digital therapeutic alliance with them, receiving harmful advice due to bias in the design and algorithm, and the chatbots inability to foster autonomy with patients., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2023 Khawaja and Bélisle-Pipon.)

Background: The twenty first century is often defined as the era of Artificial Intelligence (AI), which raises many questions regarding its impact on society. It is already significantly changing many practices in different fields. Research ethics (RE) is no exception. Many challenges, including responsibility, privacy, and transparency, are encountered. Research ethics boards (REB) have been established to ensure that ethical practices are adequately followed during research projects. This scoping review aims to bring out the challenges of AI in research ethics and to investigate if REBs are equipped to evaluate them., Methods: Three electronic databases were selected to collect peer-reviewed articles that fit the inclusion criteria (English or French, published between 2016 and 2021, containing AI, RE, and REB). Two instigators independently reviewed each piece by screening with Covidence and then coding with NVivo., Results: From having a total of 657 articles to review, we were left with a final sample of 28 relevant papers for our scoping review. The selected literature described AI in research ethics (i.e., views on current guidelines, key ethical concept and approaches, key issues of the current state of AI-specific RE guidelines) and REBs regarding AI (i.e., their roles, scope and approaches, key practices and processes, limitations and challenges, stakeholder perceptions). However, the literature often described REBs ethical assessment practices of projects in AI research as lacking knowledge and tools., Conclusion: Ethical reflections are taking a step forward while normative guidelines adaptation to AI's reality is still dawdling. This impacts REBs and most stakeholders involved with AI. Indeed, REBs are not equipped enough to adequately evaluate AI research ethics and require standard guidelines to help them do so., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Bouhouita-Guermech, Gogognon and Bélisle-Pipon.)

Background: Alternative cancer treatment is associated with a greater risk of death than cancer patients undergoing conventional treatments. Anecdotal evidence suggests cancer patients view paid advertisements promoting alternative cancer treatment on social media, but the extent and nature of this advertising remain unknown. This context suggests an urgent need to investigate alternative cancer treatment advertising on social media., Objective: This study aimed to systematically analyze the advertising activities of prominent alternative cancer treatment practitioners on Meta platforms, including Facebook, Instagram, Messenger, and Audience Network. We specifically sought to determine (1) whether paid advertising for alternative cancer treatment occurs on Meta social media platforms, (2) the strategies and messages of alternative cancer providers to reach and appeal to prospective patients, and (3) how the efficacy of alternative treatments is portrayed., Methods: Between December 6, 2021, and December 12, 2021, we collected active advertisements from alternative cancer clinics using the Meta Ad Library. The information collected included identification number, URL, active/inactive status, dates launched/ran, advertiser page name, and a screenshot (image) or recording (video) of the advertisement. We then conducted a content analysis to determine how alternative cancer providers communicate the claimed benefits of their services and evaluated how they portrayed alternative cancer treatment efficacy., Results: We identified 310 paid advertisements from 11 alternative cancer clinics on Meta (Facebook, Instagram, or Messenger) marketing alternative treatment approaches, care, and interventions. Alternative cancer providers appealed to prospective patients through eight strategies: (1) advertiser representation as a legitimate medical provider (n=289, 93.2%); (2) appealing to persons with limited treatments options (n=203, 65.5%); (3) client testimonials (n=168, 54.2%); (4) promoting holistic approaches (n=121, 39%); (5) promoting messages of care (n=81, 26.1%); (6) rhetoric related to science and research (n=72, 23.2%); (7) rhetoric pertaining to the latest technology (n=63, 20.3%); and (8) focusing treatment on cancer origins and cause (n=43, 13.9%). Overall, 25.8% (n=80) of advertisements included a direct statement claiming provider treatment can cure cancer or prolong life., Conclusions: Our results provide evidence alternative cancer providers are using Meta advertising products to market scientifically unsupported cancer treatments. Advertisements regularly referenced "alternative" and "natural" treatment approaches to cancer. Imagery and text content that emulated evidence-based medical providers created the impression that the offered treatments were effective medical options for cancer. Advertisements exploited the hope of patients with terminal and poor prognoses by sharing testimonials of past patients who allegedly were cured or had their lives prolonged. We recommend that Meta introduce a mandatory, human-led authorization process that is not reliant upon artificial intelligence for medical-related advertisers before giving advertising permissions. Further research should focus on the conflict of interest between social media platforms advertising products and public health., (©Marco Zenone, Jeremy Snyder, Jean-Christophe Bélisle-Pipon, Timothy Caulfield, May van Schalkwyk, Nason Maani. Originally published in JMIR Infodemiology (https://infodemiology.jmir.org), 31.05.2023.)

Background: Artificial intelligence (AI) systems are widely used in the health care sector. Mainly applied for individualized care, AI is increasingly aimed at population health. This raises important ethical considerations but also calls for responsible governance, considering that this will affect the population. However, the literature points to a lack of citizen participation in the governance of AI in health. Therefore, it is necessary to investigate the governance of the ethical and societal implications of AI in population health., Objective: This study aimed to explore the perspectives and attitudes of citizens and experts regarding the ethics of AI in population health, the engagement of citizens in AI governance, and the potential of a digital app to foster citizen engagement., Methods: We recruited a panel of 21 citizens and experts. Using a web-based survey, we explored their perspectives and attitudes on the ethical issues of AI in population health, the relative role of citizens and other actors in AI governance, and the ways in which citizens can be supported to participate in AI governance through a digital app. The responses of the participants were analyzed quantitatively and qualitatively., Results: According to the participants, AI is perceived to be already present in population health and its benefits are regarded positively, but there is a consensus that AI has substantial societal implications. The participants also showed a high level of agreement toward involving citizens into AI governance. They highlighted the aspects to be considered in the creation of a digital app to foster this involvement. They recognized the importance of creating an app that is both accessible and transparent., Conclusions: These results offer avenues for the development of a digital app to raise awareness, to survey, and to support citizens' decision-making regarding the ethical, legal, and social issues of AI in population health., (©Vincent Couture, Marie-Christine Roy, Emma Dez, Samuel Laperle, Jean-Christophe Bélisle-Pipon. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.04.2023.)

The application of artificial intelligence (AI) may revolutionize the healthcare system, leading to enhance efficiency by automatizing routine tasks and decreasing health-related costs, broadening access to healthcare delivery, targeting more precisely patient needs, and assisting clinicians in their decision-making. For these benefits to materialize, governments and health authorities must regulate AI, and conduct appropriate health technology assessment (HTA). Many authors have highlighted that AI health technologies (AIHT) challenge traditional evaluation and regulatory processes. To inform and support HTA organizations and regulators in adapting their processes to AIHTs, we conducted a systematic review of the literature on the challenges posed by AIHTs in HTA and health regulation. Our research question was: What makes artificial intelligence exceptional in HTA? The current body of literature appears to portray AIHTs as being exceptional to HTA. This exceptionalism is expressed along 5 dimensions: 1) AIHT's distinctive features; 2) their systemic impacts on health care and the health sector; 3) the increased expectations towards AI in health; 4) the new ethical, social and legal challenges that arise from deploying AI in the health sector; and 5) the new evaluative constraints that AI poses to HTA. Thus, AIHTs are perceived as exceptional because of their technological characteristics and potential impacts on society at large. As AI implementation by governments and health organizations carries risks of generating new, and amplifying existing, challenges, there are strong arguments for taking into consideration the exceptional aspects of AIHTs, especially as their impacts on the healthcare system will be far greater than that of drugs and medical devices. As AIHTs begin to be increasingly introduced into the health care sector, there is a window of opportunity for HTA agencies and scholars to consider AIHTs' exceptionalism and to work towards only deploying clinically, economically, socially acceptable AIHTs in the health care system., Competing Interests: IGC serves as a bioethics consultant for Otsuka on their Abilify MyCite product, is a member of the Illumina ethics advisory Board, and serves as an ethics consultant for Dawnlight. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Bélisle-Pipon, Couture, Roy, Ganache, Goetghebeur and Cohen.)

While genetic testing may be the gateway to the future of medicine, it also poses challenges for individuals, especially in terms of differentiated treatments on the basis of their genetic characteristics. The fear of unwanted disclosure to insurers and the possibility of genetic discrimination can hamper the recruitment of individuals for clinical research that involves genetic testing. Precision medicine initiatives, such as All of Us, are proliferating in the United States. In order to succeed, however, they must ensure that the millions of Americans recruited to share their genetic data are not penalized with regard to life, disability and long-term insurance coverage. In this Perspective, we discuss several initiatives adopted by countries around the world, such as the United Kingdom and France, that better balance the interests of insurers and research subjects, and explain how the United States might learn from them. We call for regulatory and industry leadership to come together to establish a voluntary moratorium on insurance pricing with the aim of protecting research participants.

Citizen Science refers to the consultation, participation, engagement or involvement of the general public in research. Rationales for this interaction include increased public access and involvement of citizens in research, immersion of community values relevant to research, outreach and educational potential with the public, and ultimately, the democratization of science. This paper focuses on the specific subset of citizen science that seeks to engage "patient partners" in health research to gain the valuable experiential knowledge of those living with a disease. Greater patient engagement in research (PER) can provide researchers with insights about citizen values and needs relevant to determining research priorities, methodology, applications and ethical parameters; this would ideally lead to more effective real-world applications. Over the last decade, projects involving patients partners in research (PPR) have varied from mere tokenism and undervaluation to full involvement and empowerment of patient participants - the former, a subject of criticism, and the latter, promoted as an ideal. In this article, we will argue that the value of that experiential knowledge from patient partners in research should not only be acknowledged through its ongoing use, but also through recognition of participants who contribute to the creation and application of new knowledge. We will explore types of recognition that might be attributed to PPR, including scientific recognition; financial recognition or reward; personal and altruistic recognition; and the benefial outcomes of research applications. We will also consider whether such types of recognition could be applied to the broader field of citizen science., Competing Interests: Competing Interest The authors have no competing interests to declare.

Background: Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER., Methods: A three-round Delphi survey was conducted with a panel of early-career researchers (ECRs) 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 (including ethical issues). Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales., Results: 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 (general practitioners and postgraduate students). The majority were between 25 and 44 years old. Panelists' responses showed PER raises important ethical issues: 1) professionalization of patients involved in research (with risks of patients becoming less representative); 2) adequate remuneration of patients; 3) fair recognition of patients' experiential knowledge; and 4) tokenism (engaging patients only for symbolic appeal). While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project., Conclusion: 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.

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 (Canada), 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., (© 2017 John Wiley & Sons Ltd.)

When decision-makers are engaged in a polarized discourse and leaving aside evidence-based recommendations, is there a role for researchers in the dissemination of this scientific evidence to the general public as a means to counterbalance the debate? In response to the controversial Bill 10 in Quebec, we developed and posted a knowledge transfer video on YouTube to help stimulate critical public debate. This article explains our approach and methodology, and the impact of the video, which, in the space of two weeks, had more than 9,500 views, demonstrating the pertinence of such initiatives. We conclude with recommendations for other research groups to engage in public debates., (Copyright © 2016 Longwoods Publishing.)