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Abstract 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.

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.

Abstract 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.

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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.

BackgroundThe 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.MethodsThree 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.ResultsFrom 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.ConclusionEthical 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.

BackgroundAlternative 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. ObjectiveThis 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. MethodsBetween 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. ResultsWe 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. ConclusionsOur 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.

BackgroundArtificial 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. ObjectiveThis 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. MethodsWe 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. ResultsAccording 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. ConclusionsThese 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.

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.

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.

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 (IRB) 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 (i.e. honoraria). 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.

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.

Plain English summary Patient-oriented research (POR) has received increasing attention in recent years. In this approach, patients’ experiential knowledge, derived from their experiences of living with a condition or illness and of interacting with the healthcare system, is recognized, valued, and seen as complementary to scientific knowledge. Early career researchers (ECRs) are the next generation of researchers, but little is known about how they perceive POR. In this study, ECRs were invited to reflect on what POR is, how patients can best contribute to research, and ECRs’ own role in developing POR. Using a technique designed to collect expert opinions and find consensus—the Delphi method—a panel of 16 ECRs responded, in three rounds, to three questionnaires, with the second and third being built on responses to the preceding ones. Based on their understanding, the panelists agreed that the most important element in defining POR would be valuing, mobilizing, and legitimizing the experiential knowledge of patients who live with a particular health condition. Panelists considered patients to be integral members of the research team, but were less convinced that they should be considered co-researchers. The panelists saw themselves as taking part in developing POR by sharing information, teaching, and encouraging POR among their peers, as well as by participating actively in organizations interested in POR. This is the first study to examine the perspectives of ECRs, who, along with many others, have an important role in supporting the on-going development of POR so that it becomes more widely adopted. Abstract Background Literature on patient-oriented research (POR) is growing rapidly. This field is increasingly encouraged by funders and structured by new research networks. POR involves moving away from considering patients as ‘subjects’, towards perceiving them as experts with experience-based knowledge. However, little is known about how early-career researchers (ECRs) perceive POR and their roles in developing it. This study examined how ECRs perceive POR, patients’ roles, the future of POR, and their own role in developing this approach. Methods A three-round Delphi study was conducted with Quebec’s Strategy for People and Patient-Oriented Research and Trials (SUPPORT) Unit awardees, composed of graduate students and clinicians, all ECRs. Of the 25 invited, 18 agreed to participate (72%), with a three-round retention rate of 89% (n = 16 on 18). Panelists answered open-ended questions, selected the most salient statements, and rated their (dis)agreement with proposals using a 7-point scale. Results Five main themes emerged: 1) ECRs’ knowledge of and experience with POR; 2) the POR definition; 3) patients’ roles and contributions; 4) the future of POR; and 5) ECRs’ roles in POR development. This study revealed that the ECRs were not so familiar with POR, even given their opportunities for networking within a scholarship program. Panelists agreed on the main components of a POR definition: valuing, mobilizing, and legitimizing the experiential knowledge of patients living with a health condition; conducting research that focuses on patients’ concerns, participation, and outcomes; and integrating active partnership among a variety of actors. Panelists considered patients to be integral members of the research team (M = 5.31 ± 1.66), but were less convinced they should be considered co-researchers (M = 4.50 ± 1.75). Panelists saw themselves as playing many roles in developing POR, such as becoming well-informed about it and acting as knowledge brokers, motivators, doers, delegators, and activists. Conclusion The ECRs’ perspectives are informative on how the next generation of researchers envision POR, its future and how they might contribute to developing this approach. There is a clear need for a coherent and concerted strategy for POR capacity development, in which ECRs’ perspectives and their specific needs are taken into account.

Healthcare providers (HCP) have been central actors in containing the COVID-19 pandemic. Although potentially very beneficial, the implementation of large-scale rapid serological tests raises ethical dilemmas and affects HCPs’ capacity to work in optimal conditions. In this regard, we call for attention to address specific and urgent ethical issues distinctively affecting HCPs following the availability and possible mandatory use of rapid serological tests for COVID-19.

Abstract 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.

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 (PPRs) 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 PPRs 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 PPRs, including scientific recognition; financial recognition or reward; personal and altruistic recognition; and the beneficial outcomes of research applications. We also will consider whether such types of recognition could be applied to the broader field of citizen science.

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 (often collected without the consent of those being studied). This exceptionalism is ethically problematic due to important concerns (e.g., protection of privacy and potential harms of secondary uses of data) and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

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 (PER) 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.