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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.

BackgroundWhile the evidence base on web-based cancer misinformation continues to develop, relatively little is known about the extent of such information on the world’s largest e-commerce website, Amazon. Multiple media reports indicate that Amazon may host on its platform questionable cancer-related products for sale, such as books on purported cancer cures. This context suggests an urgent need to evaluate Amazon.com for cancer misinformation. ObjectiveThis study sought to (1) examine to what extent are misleading cancer cure books for sale on Amazon.com and (2) determine how cancer cure books on Amazon.com provide misleading cancer information. MethodsWe searched “cancer cure” on Amazon.com and retrieved the top 1000 English-language book search results. We reviewed the books’ descriptions and titles to determine whether the books provided misleading cancer cure or treatment information. We considered a book to be misleading if it suggested scientifically unsupported cancer treatment approaches to cure or meaningfully treat cancer. Among books coded as misleading, we conducted an inductive latent thematic analysis to determine the informational value the books sought to offer. ResultsNearly half (494/1000, 49.4%) of the sampled “cancer cure” books for sale on Amazon.com appeared to contain misleading cancer treatment and cure information. Overall, 17 (51.5%) out of 33 Amazon.com results pages had 50% or more of the books coded as misleading. The first search result page had the highest percentage of misleading books (23/33, 69.7%). Misleading books (n=494) contained eight themes: (1) claims of efficacious cancer cure strategies (n=451, 91.3%), (2) oversimplifying cancer and cancer treatment (n=194, 39.3%), (3) falsely justifying ineffective treatments as science based (n=189, 38.3%), (4) discrediting conventional cancer treatments (n=169, 34.2%), (5) finding the true cause of cancer (n=133, 26.9%), (6) homogenizing cancer (n=132, 26.7%), (7) discovery of new cancer treatments (n=119, 24.1%), and (8) cancer cure suppression (n=82, 16.6%). ConclusionsThe results demonstrate that misleading cancer cure books are for sale, visible, and prevalent on Amazon.com, with prominence in initial search hits. These misleading books for sale on Amazon can be conceived of as forming part of a wider, cross-platform, web-based information environment in which misleading cancer cures are often given prominence. Our results suggest that greater enforcement is needed from Amazon and that cancer-focused organizations should engage in preemptive misinformation debunking.

BackgroundComplementary and alternative (CAM) cancer treatment is often expensive and not covered by insurance. As a result, many people turn to crowdfunding to access this treatment. ObjectiveThe aim of this study is to identify the rationales of patients with cancer seeking CAM treatment abroad by looking specifically at crowdfunding campaigns to support CAM cancer treatment in Tijuana, Mexico. MethodsWe scraped the GoFundMe.com and GiveSendGo.com crowdfunding platforms for campaigns referencing CAM cancer clinics in Tijuana, initiated between January 1, 2022, and February 28, 2023. The authors created a coding framework to identify rationales for seeking CAM treatment in Tijuana. To supplement campaign metadata, we coded the beneficiary’s cancer stage, type, age, specific treatment sought, whether the beneficiary died, gender, and race. ResultsPatients sought CAM cancer treatment in Tijuana because the (1) treatment offers the greatest efficacy (29.9%); (2) treatment offered domestically was not curative (23.2%); (3) the clinic treats the whole person, and addresses the spiritual dimension of the person (20.1%); (4) treatments are nontoxic, natural, or less invasive (18.2%); and (5) clinic offers the newest technology (8.5%). Campaigns raised US $5,275,268.37 and most campaign beneficiaries were women (69.7%) or White individuals (71.1%). ConclusionsThese campaigns spread problematic misinformation about the likely efficacy of CAM treatments, funnel money and endorsements to CAM clinics in Tijuana, and leave many campaigners short of the money needed to pay for CAM treatments while costing beneficiaries and their loved one’s time, privacy, and dignity. This study affirms that Tijuana, Mexico, is a very popular destination for CAM cancer treatment.

Purpose of review: Precision tools that ensure molecular compatibility can help prevent rejection and improve kidney transplantation outcomes. However, these tools will generate controversy because they are perceived to and can in fact impact equity in the ethics of allocation. They may also affect the extent to which physicians can advocate for their patient fiduciaries, as generally required by Canadian professional ethics and law. Sources of information: Electronic databases such as Google Scholar and PubMed were searched for peer-reviewed literature, and Google search engine was used to identify the news articles, jurisprudence, legal information, and other relevant websites cited. Methods: We discuss controversies precision transplantation tools will likely generate, consider what challenges will arise from their implementation, and provide recommendations of avenues and content for communication to address these issues. Key findings: Communication about the translation of new precision tools will be challenging as media portrayals of transplantation often focus on individual narratives about access to transplantation and fail to center the issues of utility, allocation, and rejection. Incomplete portrayals of this nature will need to be countered with explanations of how new precision tools can be of net benefit when implemented equitably, as maintaining trust in the donation and transplantation system is key. Limitations: Our manuscript focuses on precision medicine applications pertaining to the implementation of molecular compatibility in transplantation. Distinct communication content and avenues may need to be considered in other contexts. Implications: Clear, accurate, and strategic communication is key to managing translation of precision medicine tools. For this purpose, we provide detailed recommendations for stakeholder engagement, content, and avenues for communicating about precision transplantation tools.

Objective TikTok is one of the most popular social media platforms and plays a role in shaping public perceptions. This research examined how organ donation was portrayed on the platform. Methods We built a dataset of the most popular English-language TikTok videos that used the hashtags #organdonor or #organdonation. We then performed content analysis on the 400 most viewed videos after limiting data set inclusion to one video per user account. Results The finalized videos ( N = 313) had generated nearly 80 million views and 10 million likes. Featuring both donors (56.2%) and recipients (44.1%), videos shared experiences that celebrated and lamented lost donor lives (41.8%) while also celebrating transplantation successes (31.3%). Very few videos included public solicitation (2.9%). Common video traits included detailing medical procedures (45.4%), presenting honor walks (10.9%), and displaying donors and recipients connecting or wanting to connect (16.9%). Videos mostly had a positive (74.1%) versus negative (10.2%) leaning tone. Conclusion Far from superficially glamorizing organ donation/transplantation processes and procedures, popular English-language TikTok videos depicted what we perceived as highly emotional and expository experiences. While the videos likely offered learning and cathartic opportunities for individuals and communities, they also highlight some tensions between personal anecdotes and data/research. Findings from this research can inform public outreach efforts as well as policies related to protecting anonymity and celebrating donors with honor walks. Indeed, given TikTok's increasing popularity and influence, it could be a valuable tool to meaningfully learn from, and engage with, patient and donor communities.

Introduction Misinformation refers to inadvertent misleading information that the public may be exposed and share without intent to cause harm, and can delay or prevent effective care, affect mental health, lead to misallocation of health resources and/or create or exacerbate public-health crises. There are many strategies to address misinformation, but there is a need to evaluate their effects. Our objective is to synthesise and routinely update evidence to assess the impact of strategies to mitigate health-related misinformation in diverse settings, and populations.Methods and analysis We will search seven databases in May 2023 with planned updates at 6 and 9 months, which will be supplemented with searches for grey literature and reference lists of included studies and contacting experts. Two reviewers will independently screen all search results for studies that evaluate one or more approaches to addressing health-related misinformation. One researcher will conduct data extraction and risk of bias assessments, which will be reviewed by a second reviewer for accuracy. We will include experimental, quasi-experimental and observational studies for any populations, settings and diseases without language or publication restrictions. We will conduct quantitative analysis if meta-analytical pooling is possible. If pooling is not possible, we will synthesise quantitative data according to outcomes and interventions addressed, and present a narrative summary of findings disaggregated by sex and/or gender, irrespective of whether differences were found.Ethics and dissemination There are no individuals or protected health information involved and no safety issues identified. Results will be published through the Global Commission on Evidence and COVID-END websites, in a peer-reviewed journal, as well as through plain-language materials.PROSPERO registration number CRD42023421149.

Vaccine certificates have been implemented worldwide, aiming to promote vaccination rates and to reduce the spread of COVID-19. However, their use during the COVID-19 pandemic was controversial and has been criticized for infringing upon medical autonomy and individual rights. We administered a national online survey exploring social and demographic factors predicting the degree of public approval of vaccine certificates in Canada. We conducted a multivariate linear regression which revealed which factors were predictive of vaccine certificate acceptance in Canada. Self-reported minority status (p

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.

This paper builds on prior work exploring the use of risk-associated alternative healthcare (RAAH) in Canada. RAAH uptake was surveyed to explore the characteristics of adult RAAH users and the value of established psychometric instruments previously used in alternative healthcare studies in predicting RAAH behaviours: the Control Beliefs Inventory (CBI), the Reward Responsiveness Behavioural Activation System (RBAS) scale, the Positive Attitudes to Science (PAS) scale, the Satisfaction with Orthodox Medicine (SOM) scale, and the brief version of the Susceptibility to Persuasion-II (StP-II-B) scale. Findings suggest RAAH is influenced by gender, age, income, education, employment, chronic illness status, and ethnicity. Engagement in some form of RAAH was common (around 40%) and the most common types of RAAH use reported were physical manipulation and herbal/nutritional supplement use. Other higher-risk AH activities (such as use of toxins and physically invasive procedures) were also reported by about 5% of respondents. The StP-II-B and PAS instruments were predictive of the likelihood of engagement in RAAH behaviours, as illustrated by higher risk tolerance, desire for novelty, positive attitude to advertising and social influence, and positive beliefs about science. The CBI, RBAS, and SOM instruments were not predictive overall. However, the CBI and SOM instruments were predictive of engagement with physical manipulative RAAH activities, while the RBAS was predictive of herbal/nutritional RAAH engagement. These findings can help inform health professionals' understanding of public health-seeking behaviours with respect to risk.

Artificial intelligence (AI) is increasingly being developed and implemented in healthcare. This presents privacy issues since many AIs are privately owned and rely on data sharing arrangements for mass quantities of patient health information. We investigated the Canadian legal and policy framework focusing on regulation relevant to the potential for inappropriate use or disclosure of personal health information by private AI companies. This included analysis of federal and provincial legislation, common law and research ethics policy. Our evaluation of the various regulatory frameworks found that together they require private AI companies and their partners in healthcare implementation to meet high standards of privacy protection that prioritize patient autonomy, with limited exceptions. We found that healthcare AI systems are required to be consistent with the rules and foundational ethical norms enshrined in law and research ethics, even if this poses challenges to implementation. Data sharing arrangements must focus on tight integration with high levels of data security, strong oversight and retention of patient control over data.

The growth of consumer DNA ancestry testing has resulted in questions and critiques being raised in social and research contexts. This study examined individuals discussing their ancestry DNA testing results on YouTube by searching for the two most popular testing companies (23andMe; Ancestry) and the phrase “DNA results.” The finalized dataset consisted of 117 videos, on which directed content analysis was performed. In the videos, individuals used results to clarify, confirm, question, and re-evaluate their previously held conceptions of racial/ethnic identities. Reactions were more positive than negative (88.1% vs. 8.1%), and results more commonly reaffirmed (77.8%) than re-conceptualized (40.0%) one’s racial/ethnic identity. Ancestry testing and personal social media accounts were commonly promoted, demonstrating biotechnological hype where promotion abounds and critiques are scarce. Questions persist around the impact of ancestry DNA testing in reifying a scientifically inaccurate conception of race and what impact YouTube videos might have on audiences.

COVID science is being both done and circulated at a furious pace. While it is inspiring to see the research community responding so vigorously to the pandemic crisis, all this activity has also created a churning sea of bad data, conflicting results, and exaggerated headlines. With representations of science becoming increasingly polarized, twisted, and hyped, there is growing concern that the relevant science is being represented to the public in a manner that may cause confusion, inappropriate expectations, and the erosion of public trust. Here we explore some of the key issues associated with the representations of science in the context of the COVID-19 pandemic. Many of these issues are not new. But the COVID-19 pandemic has placed a spotlight on the biomedical research process and amplified the adverse ramifications of poor public communication. We need to do better. As such, we conclude with 10 recommendations aimed at key actors involved in the communication of COVID-19 science, including government, funders, universities, publishers, media, and the research communities.

BackgroundThe “infodemic” accompanying the SARS-CoV-2 virus pandemic has the potential to increase avoidable spread as well as engagement in risky health behaviors. Although social media platforms, such as YouTube, can be an inexpensive and effective method of sharing accurate health information, inaccurate and misleading information shared on YouTube can be dangerous for viewers. The confusing nature of data and claims surrounding the benefits of vitamin D, particularly in the prevention or cure of COVID-19, influences both viewers and the general “immune boosting” commercial interest. ObjectiveThe aim of this study was to ascertain how information on vitamin D and COVID-19 was presented on YouTube in 2020. MethodsYouTube video results for the search terms “COVID,” “coronavirus,” and “vitamin D” were collected and analyzed for content themes and deemed useful or misleading based on the accuracy or inaccuracy of the content. Qualitative content analysis and simple statistical analysis were used to determine the prevalence and frequency of concerning content, such as confusing correlation with causation regarding vitamin D benefits. ResultsIn total, 77 videos with a combined 10,225,763 views (at the time of data collection) were included in the analysis, with over three-quarters of them containing misleading content about COVID-19 and vitamin D. In addition, 45 (58%) of the 77 videos confused the relationship between vitamin D and COVID-19, with 46 (85%) of 54 videos stating that vitamin D has preventative or curative abilities. The major contributors to these videos were medical professionals with YouTube accounts. Vitamin D recommendations that do not align with the current literature were frequently suggested, including taking supplementation higher than the recommended safe dosage or seeking intentional solar UV radiation exposure. ConclusionsThe spread of misinformation is particularly alarming when spread by medical professionals, and existing data suggesting vitamin D has immune-boosting abilities can add to viewer confusion or mistrust in health information. Further, the suggestions made in the videos may increase the risks of other poor health outcomes, such as skin cancer from solar UV radiation.

Abstract “Immune boosting” is a trending topic during the COVID-19 pandemic. The concept of “immune boosting” is scientifically misleading and often used to market unproven products and therapies. This paper presents an analysis of popular immune-boosting posts from Instagram. Of the sampled posts, all promoted “immune boosting” as beneficial, nearly all involved commercial interests, and many used scientific and medical rhetoric in their messaging.

Abstract Background Private umbilical cord blood banking is a for-profit industry in which parents pay to store blood for potential future use. Governments have noted the tendency for private banks to oversell the potential for cord blood use, especially in relation to speculative cell therapies not yet supported by clinical evidence. We assessed the regulatory landscape governing private cord bank marketing in Canada. Main body Because the problematic marketing of private cord blood banking for future use often relates to speculative future cell therapies that do not exist and are not being advertised for current clinical use, most private blood bank marketing seems to fall outside Health Canada’s regulatory scope. However, this problematic marketing is regulated by the Competition Bureau pursuant to the Competition Act. While representations relating to future hypothetical treatments may not always be subject to the legal requirement for claim substantiation, the law also prohibits individuals and companies from knowingly or recklessly making representations that are “false or misleading in a material respect.” A representation is materially false or misleading when it could “influence a consumer’s behavior or purchasing decisions,” and consumers are likely to be considered to be “credulous and inexperienced” for the purposes of assessing an advertisement’s general impression. Because all of the potential benefit of the banking is derived from the potential future use of the biological material for health interventions directed toward the customers and their relatives, and because we know the best available medical evidence indicates a very low probability of utility in this context, we can say with confidence that some private cord blood banking claims are materially misleading. Moreover, to the extent that medical professionals are involved in private bank interactions with customers or hold ownership stakes in private banks, they are subject to professional codes, standards of practice, and potentially fiduciary obligations that further prohibit misleading marketing. Conclusions Private cord blood bank marketing that advertises hypothetical future treatments can be misleading and may influence consumer behaviour. This marketing may breach existing advertising law. Regulatory bodies should enforce the law in order to help prevent public health and personal financial harm.

Natural herd immunity, where community-acquired infections in low-risk populations are used to protect high risk populations from infection-has seen high profile support in some quarters, including through the Great Barrington Declaration. However, this approach has been widely criticized as ineffective and misinformed. In this study, we examine media discourse around natural herd immunity in the United States (US) and United Kingdom (UK) to better understand how this approach was promoted. Country-specific news media publications between March 11, 2020 and January 31, 2021 were searched for references to herd immunity. News articles focused on herd immunity and including a stakeholder quote about herd immunity were collected, resulting in 400 UK and 144 US articles. Stakeholder comments were then coded by name, organization, organization type, and concept agreement or disagreement. Government figures and a small but vocal coalition of academics played a central role in promoting natural herd immunity in the news media whereas critics were largely drawn from academia and public health. These groups clashed on whether: natural herd immunity is an appropriate and effective pandemic response; the consequences of a lockdown are worse than those of promoting herd immunity; high-risk populations could be adequately protected; and if healthcare resources would be adequate under a herd immunity strategy. False balance in news media coverage of natural herd immunity as a pandemic response legitimized this approach and potentially undermined more widely accepted mitigation approaches. The ability to protect high risk populations while building herd immunity was a central but poorly supported pillar of this approach. The presentation of herd immunity in news media underscores the need for greater appreciation of potential harm of media representations that contain false balance.

Objective Extensive research and important discoveries on the microbiome have led to a growth in media coverage. This study explores how the microbiome has been portrayed in press sources popular among American and Canadian audiences.Design Content analysis.Methods Using the FACTIVA Database, we compiled a finalised data set of (N=830) articles from press sources popular among American and Canadian audiences which were published between 1 January 2018 and 11 October 2019 and which contained at least one of the following search terms: ‘microbiome’, ‘microbiota’, ‘gut health’, ‘healthy gut’, ‘unhealthy gut’, ‘gut bacteria’, ‘probiotic’ or ‘probiotics.’ We performed content analysis on the articles to determine how often ideas of the microbiome were presented as beneficial, in which health contexts, and whether actions could be taken to reap stated benefits. We compared this portrayal of benefits with critical portrayals of the microbiome.Results Almost all of the articles (94%) described health benefits associated with the microbiome with many (79%) describing actions which could be taken to reap stated benefits. Articles most often described health benefits in more broad, general context (34%) and most commonly outlined actions related to food/drug (45%) as well as probiotic (27%) intake. Only some articles (19%) provided microbiome-related critiques or limitations. Some of the articles (22%) were focused on highlighting specific research developments, and in these articles, critiques or limitations were more common.Conclusions Articles discussing the microbiome published for American and Canadian audiences typically hype the microbiome’s impact and popularise gut health trends while only offering a little in the way of communicating microbiome science. Lifestyle choices including nutrition, taking probiotics, stress management and exercise are often promoted as means of reaping the microbiome-related health benefits. The trend of actionable ‘gut health’ is foregrounded over more evidence-based descriptions of microbiome science.

Abstract Background Vertebral subluxation theories are controversial in chiropractic. Divisions are evident in the chiropractic community among those who align their practices to subluxation theories and those who do not. This study investigated how many clinics offering chiropractic in the Canadian province of Alberta promote a theory of subluxation, which health ailments or improvements were linked to subluxation, and whether the subluxation discourse was used to promote chiropractic for particular demographics. Methods Using the search engine on the Canadian Chiropractic Associations’ website, we made a list of all clinics in Alberta. We then used Google searches to obtain a URL for each clinic with a website, totalling 324 URLs for 369 clinics. We then searched on each website for “subluxation” and performed content analysis on the related content. Results One hundred twenty-one clinics’ websites (33%) presented a theory of vertebral subluxation. The health ailments and improvements discussed in relation to subluxation were wide-ranging. An observed trend was the marketing of chiropractic for children, which was observed on 29 clinic websites (8%). Conclusions Based on the controversy surrounding vertebral subluxation, the substantial number of clinic websites aligning their practice with vertebral subluxation should cause concern for regulatory bodies.

Abstract Background The marketing of unproven direct-to-consumer stem cell interventions is becoming widespread in Canada. There is little evidence supporting their use and they have been associated with a range of harms. Canada has been slower to act against clinics offering these interventions than other jurisdictions, including the United States. Here, we outline the regulatory and policy tools available in Canada to address this growing problem. Main body Health Canada’s regulations governing cell therapies are complex, but recent statements make it clear that Health Canada believes it has jurisdiction over many of the currently marketed stem cell interventions. Still, further regulatory clarity is needed from Health Canada, as are increased directed enforcement efforts on interventions that fall within their scope. The Competition Bureau, via the Competition Act, prohibits advertisers from making materially false or misleading promotional representations. The Competition Bureau could collaborate with the scientific community to analyze the claims of existing clinics in Canada, and impose sanctions upon those who breach the established standard. Professional regulators, including provincial colleges of physicians and surgeons, have considerable power over what products and services their members can offer. Every college of physicians in Canada requires, via policy and codes of ethics, that doctors maintain evidence-based practices. This requirement is incompatible with offering many unproven stem cell interventions. Litigation may be another tool, including the use of fraud, misrepresentation and/or negligence claims for failing to meet the required standard of care. Finally, political pressure on federal and provincial lawmakers could encourage changes to marketing, cell therapy and professional regulations that would allow a more comprehensive response. Conclusions In sum, there are many existing tools that can be used to protect the public from unproven stem cell interventions. Increased bureaucratic will and grassroots efforts are needed in order to effect a positive policy response.

Providers capitalize on patient testimonials to market unproven stem cell treatments (SCTs). We evaluated 159 YouTube videos and found patients discussed health improvements (91.2%), praised providers (53.5%), and recommended SCTs (28.9%). In over a third of the videos, providers posed questions to patients, thereby directing narratives and making them a powerful marketing tool.

Open science can significantly influence the development and translational process of precision medicine in Canada. Precision medicine presents a unique opportunity to improve disease prevention and healthcare, as well as to reduce health-related expenditures. However, the development of precision medicine also brings about economic challenges, such as costly development, high failure rates, and reduced market size in comparison with the traditional blockbuster drug development model. Open science, characterized by principles of open data sharing, fast dissemination of knowledge, cumulative research, and cooperation, presents a unique opportunity to address these economic challenges while also promoting the public good. The Centre of Genomics and Policy at McGill University organized a stakeholders’ workshop in Montreal in March 2018. The workshop entitled “Could Open be the Yellow Brick Road to Precision Medicine?” provided a forum for stakeholders to share experiences and identify common objectives, challenges, and needs to be addressed to promote open science initiatives in precision medicine. The rich presentations and exchanges that took place during the meeting resulted in this consensus paper containing key considerations for open science precision medicine in Canada. Stakeholders would benefit from addressing these considerations as to promote a more coherent and dynamic open science ecosystem for precision medicine.

Objective The spread of misinformation has accompanied the coronavirus pandemic, including topics such as immune boosting to prevent COVID-19. This study explores how immune boosting is portrayed on the internet during the COVID-19 pandemic.Design Content analysis.Methods We compiled a dataset of 227 webpages from Google searches in Canada and the USA using the phrase ‘boost immunity’ AND ‘coronavirus’ on 1 April 2020. We coded webpages for typology and portrayal of immune boosting and supplements. We recorded mentions of microbiome, whether the webpage was selling or advertising an immune boosting product or service, and suggested strategies for boosting immunity.Results No significant differences were found between webpages that appeared in the searches in Canada and the USA. The most common types of webpages were from news (40.5%) and commercial (24.7%) websites. The concept of immune boosting was portrayed as beneficial for avoiding COVID-19 in 85.5% of webpages and supplements were portrayed as beneficial in 40% of the webpages, but commercial sites were more likely to have these portrayals. The top immune boosting strategies were vitamin C (34.8%), diet (34.4%), sleep (34.4%), exercise (30.8%) and zinc (26.9%). Less than 10% of the webpages provide any critique of the concept of immune boosting.Conclusions Pairing evidence-based advice for maintaining one’s health (eg, healthy diet, exercise, sleep) with the phrase immune boosting and strategies lacking in evidence may inadvertently help to legitimise the concept, making it a powerful marketing tool. Results demonstrate how the spread of misinformation is complex and often more subtle than blatant fraudulent claims.

The Anatomy Table is a print-based work that thematically addresses the loss of public trust in science, as well as misinformation surrounding science-informed interventions in health care, such as vaccination. Drawing on the history of anatomical illustration by referencing Andrea Vesalius’s famous 16th-century anatomical book, On the Fabric of the Human Body, the work combines this with contemporary drawings that suggest anatomy but which have an imagined, nonsensical quality, indicating to viewers that the drawings are not accurate representations of human anatomy. In addition to reflecting on this piece and the process of collaboration, Caulfield, Caulfield, and Holst discuss the challenge of countering misinformation in healthcare today. The work was created through collaborative dialogue between Sean Caulfield, a professor in the Department of Art and Design at the University of Alberta, Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, and Johan Holst, senior scientist previously working at the Norwegian Institute of Public Health in Oslo and from August 2016 being a vaccine expert at the Headquarter of CEPI (Coalition for Epidemic Preparedness Innovations), situated in Oslo, Norway.

The obligation to maintain the privacy of patients and research participants is foundational to biomedical research. But there is growing concern about the challenges of keeping participant information private and confidential. A number of recent studies have highlighted how emerging computational strategies can be used to identify or reidentify individuals in health data repositories managed by public or private institutions. Some commentators have suggested the entire concept of privacy and anonymity is “dead”, and this raises legal and ethical questions about the consent process and safeguards relating to health privacy. Members of the public and research participants value privacy highly, and inability to ensure it could affect participation. Canadian common law and legislation require a full and comprehensive disclosure of risks during informed consent, including anything a reasonable person in the participant or patient’s position would want to know. Research ethics policies require similar disclosures, as well as full descriptions of privacy related risks and mitigation strategies at the time of consent. In addition, the right to withdraw from research gives rise to a need for ongoing consent, and material information about changes in privacy risk must be disclosed. Given the research ethics concept of “non-identifiability” is increasingly questionable, policies based around it may be rendered untenable. Indeed, the potential inability to ensure anonymity could have significant ramifications for the research enterprise.

There is increasing interest in the use of precision medicine tools and evidence-based outcome measures for donor-recipient matching to optimize transplant outcomes. Although the shift toward greater precision can provide health and resource benefits, it may be perceived as conflicting with both established equity-focused organ allocation norms and the legal and ethical obligations of health care providers and related institutions. With increasing evidence that various forms of human leukocyte antigen (HLA) mismatch and/or prognostic biomarkers can affect outcomes, the tension between maximizing utility and ensuring equity seems likely to intensify. In Canada, health care providers are generally required by law to put the interests of their patient, such as access to an organ, above the needs of the health care system and other patients. In addition, transplantation right of access lawsuits, which have been successful in the past, could affect the implementation of precision approaches. These legal tensions could be further heightened by media representations, which have historically favored strong rights of access. When implementing new precision technologies in organ allocation, there will be a recurrent need for policymakers to revisit the balance of equity and utility and to assess how to craft rules that reflect our society’s conception of a fair allocation system.

BackgroundComplementary and alternative medicine (CAM) is increasingly being integrated into conventional medical care for cancer, used to counter the side effects of conventional cancer treatment, and offered as an alternative to conventional cancer care. Our aim is to gain a broader understanding of trends in CAM interventions for cancer and crowdfunding campaigns for these interventions.MethodsGoFundMe campaigns fundraising for CAM were retrieved through a database of crowdfunding campaign data. Search terms were drawn from two National Institutes of Health lists of CAM cancer interventions and a previous study. Campaigns were excluded that did not match these or related search terms or were initiated outside of June 4th, 2018 to June 4th, 2019.Results1,396 campaigns were identified from the US (n = 1,037, 73.9%), Canada (n = 165, 11.8%), and the UK (n = 107, 7.7%). Most common cancer types were breast (n = 344, 24.6%), colorectal (n = 131, 9.4%), and brain (n = 98, 7.0%). CAM interventions sought included supplements (n = 422, 30.2%), better nutrition (n = 293, 21.0%), high dose vitamin C (n = 276, 19.8%), naturopathy (n = 226, 16.2%), and cannabis products (n = 211, 15.1%). Mexico (n = 198, 41.9%), and the US (n = 169, 35.7%) were the most common treatment destinations.ConclusionsThese findings confirm active and ongoing interest in using crowdfunding platforms to finance CAM cancer interventions. They confirm previous findings that CAM users with cancer tend to have late stage cancers, cancers with high mortality rates, and specific diseases such as breast cancer. These findings can inform targeted responses where facilities engage in misleading marketing practices and the efficacy of interventions is unproven.

Abstract Background There is ongoing controversy surrounding the appropriate standards and limits of accommodation of children with food allergies in schools. We identify and explain how relevant Canadian common law, legislation, constitutional law and human rights policy can inform future school policy around allergy, disability and food bans. Main body The Canadian Charter of Rights and Freedoms applies to governmental laws or policies, including the policies of schools, and grants every individual the right to freedom from discrimination based on, among other things, disability. Canadian constitutional and human rights law define disability broadly including perceived disabilities. Provincial human rights tribunals in both Ontario and BC have explicitly found allergy to be a disability requiring accommodation, even in cases not involving anaphylaxis risk. However, the cases most pertinent to the scenarios faced by schools have found that food bans may not be required, due to recent scientific evidence that they do not render allergy sufferers safer. Conclusion Anaphylaxis-level allergy constitutes a disability under both the Charter and human rights legislation, despite the fact that higher courts have not definitively ruled on the matter. Accordingly, schools must make careful decisions about how to deal with life-threatening allergies among their students. Food bans are generally not legally necessary, and, in the absence of new legislation, are only likely to become so if sufficient scientific evidence demonstrates that they increase safety for students. School policies should be substantially informed by evidence-based research in order to ensure ongoing congruence with human rights law.

Obesity is a stigmatized disease due to pervasive personal, professional, institutional, and cultural weight bias. Individuals with obesity experience weight bias across their lifespan and settings, which can affect their life chances and significantly impact health and social outcomes. The objectives of this study were to: (a) explore weight bias and stigma experiences of people living with obesity; (b) develop counterstories that can reduce weight bias and stigma; and (c) reflect on current obesity master narratives and identify opportunities for personal, professional, and social change.Methods: Using purposive sampling, we lived alongside and engaged persons with obesity (n = 10) in a narrative inquiry on weight bias and obesity stigma. We co-developed interim narrative accounts while applying the three-dimensional narrative inquiry space: (a) temporality; (b) sociality; and (c) place, to find meaning in participants’ experiences. We also applied the narrative repair model to co-create counterstories to resist oppressive master narratives for participants and for people living with obesity in general.Results: We present 10 counterstories, which provide a window into the personal, familial, professional, and social contexts in which weight bias and obesity stigma take place.Discussion: A fundamental driver of participants’ experiences with weight bias is a lack of understanding of obesity, which can lead to internalized weight bias and stigma. Weight bias internalization impacted participants’ emotional responses and triggered feelings of shame, blame, vulnerability, stress, depression, and even suicidal thoughts and acts. Participants’ stories revealed behavioral responses such as avoidance of health promoting behaviors and social isolation. Weight bias internalization also hindered participants’ obesity management process as well as their rehabilitation and recovery strategies. Participants embraced recovery from internalized weight bias by developing self-compassion and self-acceptance and by actively engaging in efforts to resist damaged social identities and demanding respect, dignity, and fair treatment.Conclusion: Narrative inquiry combined with the narrative repair model can be a transformative way to address internalized weight bias and to resist damaged social identities for people living with obesity. By examining experiences, beliefs, values, practices, and relationships that contribute to dominant obesity narratives, we can begin to address some of the socially and institutionally generated negative views of individuals with obesity.

Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many ways failed the public, changes in approach are required, including the creative use of narratives.

BackgroundMedical crowdfunding is a growing phenomenon, and newspapers are publishing on the topic. This research analyzed how illness-related crowdfunding and crowdfunding campaigns have recently been represented in newspapers that are popular in the United States and Canada.MethodsA sample of 336 articles about medical crowdfunding published during the two year time period from October 7, 2015 to October 6, 2017 was produced using a Factiva search of the English language newspapers with the largest Canadian and United States readership. A coding frame was developed for and applied to the sample to analyze content.ResultsArticles portrayed crowdfunding campaigns positively (43.75%) and neutrally (47.92%), but rarely negatively (4.76%). Articles mostly mentioned the crowdfunding phenomenon with a neutral characterization (93.75%). Few (8.63%) articles mentioned ethical issues with the phenomenon of crowdfunding. Ailments most commonly precipitating the need for a campaign included cancer (49.11%) and rare disease (as stated by the article, 36.01%). Most articles (83.04%) note where donations and contributions can be made, and 59.23% included a hyperlink to an online crowdfunding campaign website. Some articles (26.49%) mentioned a specific monetary goal for the fundraising campaign. Of the 70 (20.83%) articles that indicated the treatment sought may be inefficacious, was unproven, was experimental or lacked regulatory approval, 56 (80.00%) noted where contributions can be made and 36 (51.43%) hyperlinked directly to an online crowdfunding campaign.ConclusionsCrowdfunding campaigns are portrayed positively much more often than negatively, many articles promote campaigns for unproven therapies, and links directly to crowdfunding campaign webpages are present in most articles. Overall, crowdfunding is often either implicitly or explicitly endorsed.

The International Society for Stem Cell Research (ISSCR) presents its 2016 Guidelines for Stem Cell Research and Clinical Translation (ISSCR, 2016). The 2016 guidelines reflect the revision and extension of two past sets of guidelines (ISSCR, 2006; ISSCR, 2008) to address new and emerging areas of stem cell discovery and application and evolving ethical, social, and policy challenges. These guidelines provide an integrated set of principles and best practices to drive progress in basic, translational, and clinical research. The guidelines demand rigor, oversight, and transparency in all aspects of practice, providing confidence to practitioners and public alike that stem cell science can proceed efficiently and remain responsive to public and patient interests. Here, we highlight key elements and recommendations in the guidelines and summarize the recommendations and deliberations behind them. : The International Society for Stem Cell Research (ISSCR) presents its 2016 Guidelines for Stem Cell Research and Clinical Translation (ISSCR, 2016). The 2016 guidelines reflect the revision and extension of two past sets of guidelines (ISSCR, 2006; ISSCR, 2008) to address new and emerging areas of stem cell discovery and application and evolving ethical, social, and policy challenges. These guidelines provide an integrated set of principles and best practices to drive progress in basic, translational, and clinical research. The guidelines demand rigor, oversight, and transparency in all aspects of practice, providing confidence to practitioners and public alike that stem cell science can proceed efficiently and remain responsive to public and patient interests. Here, we highlight key elements and recommendations in the guidelines and summarize the recommendations and deliberations behind them. Keywords: stem cells, guidelines, embryo research, EMRO, clinical translation, clinical trials, communication

Influenza vaccine uptake is less-than-ideal in many jurisdictions, including Canada. In this study we sought to assess news articles relating to influenza vaccination by major Canadian newspapers during a six-month period relatively congruent to the seasonal influenza outbreak for 2017–2018. We identified 116 unique articles published between August 16, 2017 and February 15, 2018, then developed and applied a coding frame to them.Influenza vaccination was portrayed primarily positively (74.14%), sometimes negatively (14.66%), and occasionally neutrally (11.21%). Articles were most commonly focused on news about the prevalence, or amount of harm/death caused by, the influenza virus (31.03%), or on public announcements primarily concerning influenza vaccination (17.24%). Benefits of influenza vaccination were often stated (59.48%), most commonly including reduction in disease (47.41%) and protection of vulnerable individuals (26.72%). Issues or problems with influenza vaccination were also often stated (55.17%), most commonly relating to low or non-effectiveness of the vaccine (43.10%). Most articles stated that people should get vaccinated (65.52%).Canadian newspaper articles generally support the scientific consensus that influenza vaccination is a highly positive intervention. Nonetheless, a clear picture of the true value of influenza vaccination may sometimes be missing in articles focusing on low effectiveness and lacking any mention of vaccination's positive value. Overall, we can reasonably conclude that, in Canada, misinformation and antivaccination rhetoric are coming primarily from sources other than newspapers.

Pragmatic clinical trials (PCTs) are a relatively new methodological approach to the execution of clinical research that can increase research efficiency and provide access to unique data. Some have suggested that the costs and delays associated with obtaining informed consent could make PCTs difficult or even impossible to execute. Alternative consent models have been proposed, some of which lower standards of disclosure, delay consent, or waive it altogether. We analyze the permissibility of changes to informed consent in the context of Canadian research ethics policies, legislation, common law, professional codes of ethics, and professional standards of practice. We find that Canadian law and policy relating to informed consent clearly applies to any clinician who might be involved in a PCT. In addition, existing consent norms seem unable to accommodate alternative consent models for pragmatic research if such models would involve lowering the standard of disclosure. The strong emphasis on the primacy of individual rights that exist in law and in research ethics norms cannot easily coexist with strategies that involve either waiver of consent requirements or the provision of incomplete information about the research prior to enrolment. If Canadian policy-makers wish to create the regulatory flexibility necessary to accommodate altered consent and disclosure, it is likely this will require the alteration of existing health information legislation, national research ethics policy, and professional standards.

From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends-including concerns about commercialization and perceived rights of continuing control ("biorights")-seem likely to intensify these issues.

Platelet Rich Plasma (PRP) has gained popularity in recent years for treating sports-related injuries and the news media frequently reports on elite athletes' and celebrities' use of PRP. We conducted a content analysis of newspaper coverage of PRP in Australia, Canada, Ireland, New Zealand, United Kingdom, and the United States. Findings show that news media coverage of PRP appears most frequently in sports-related stories, and in relation to elite athletes use of PRP. PRP injections are largely portrayed as a routine treatment for sports-related injuries and newspaper articles rarely discuss the limitations or efficacy of PRP. We argue that while news media coverage of PRP exhibits very few common hallmarks of hype, its portrayal as a routine treatment used by elite athletes and celebrities creates an implicit hype. This implicit hype can contribute to public misunderstandings of the efficacy of PRP.

Numerous studies have examined health-related YouTube videos, but very few studies have also investigated the health-related discussions taking place in YouTube comment sections. Taking up the topic of chiropractic, a popular form of “alternative medicine”, this study first sought to determine if debates or controversies surrounding chiropractic were present in the comments on popular YouTube chiropractic videos. If debates were present, the goal was then to use iterative coding methods to map out how debates were unfolding by describing the general characteristics of the discussions as well as the arguments used by opposing groups. Lastly, the objective was to determine levels of hostility in the debates. Our results demonstrate that there are debates taking place over the efficacy and legitimacy of chiropractic. Furthermore, while our study maps out a wide variety of arguments and debate characteristics, key findings show that those arguing “for chiropractic” rely primarily on personal anecdotes and simultaneously raise issues with “pills” and the pharmaceutical industry. Those opposing chiropractic primarily argue that chiropractic is not sufficiently supported by evidence or “science” and often provide links to additional literature. Overall, hostility levels are quite low in the debates. With an abundance of perspectives being shared in a wide variety of manners, this study suggests that YouTube constitutes a space where individuals can discuss and debate health-related topics like chiropractic. In addition, it sheds light on the rationale underpinning diverse chiropractic-related perspectives and arguments.

The growing international market for unproven stem cell-based interventions advertised on a direct-to-consumer basis over the internet (“stem cell tourism”) is a source of concern because of the risks it presents to patients as well as their supporters, domestic health care systems, and the stem cell research field. Emerging responses such as public and health provider-focused education and national regulatory efforts are encouraging, but the market continues to grow. Physicians play a number of roles in the stem cell tourism market and, in many jurisdictions, are members of a regulated profession. In this article, we consider the use of professional regulation to address physician involvement in stem cell tourism. Although it is not without its limitations, professional regulation is a potentially valuable tool that can be employed in response to problematic types of physician involvement in the stem cell tourism market.

Background. Biobanks are an important research resource that provides researchers with biological samples, tools and data, but have also been associated with a range of ethical, legal and policy issues and concerns. Although there have been studies examining the views of different stakeholders, such as donors, researchers and the general public, the media portrayal of biobanks has been absent from this body of research. This study therefore examines how biobanking has been represented in major print newspapers from Australia, Canada, the United Kingdom and the United States to identify the issues and concerns surrounding biobanks that have featured most prominently in the print media discourse.Methods. Using Factiva, articles published in major broadsheet newspapers in Canada, the US, the UK, and Australia were identified using specified search terms. The final sample size consisted of 163 articles.Results. Majority of articles mentioned or discussed the benefits of biobanking, with medical research being the most prevalent benefit mentioned. Fewer articles discussed risks associated with biobanking. Researchers were the group of people most quoted in the articles, followed by biobank employees. Biobanking was portrayed as mostly neutral or positive, with few articles portraying biobanking in a negative manner.Conclusion. Reporting on biobanks in the print media heavily favours discussions of related benefits over risks. Members of the scientific research community appear to be a primary source of this positive tone. Under-reporting of risks and a downtrend in reporting on legal and regulatory issues suggests that the print media views such matters as less newsworthy than perceived benefits of biobanking.

Purpose of review: To date, there has been little analysis of the degree to which emerging incentive initiatives are permissible under Canadian law. The purpose of this review is to examine the relevant law – including legislation and case law – in order to clarify the legality of existing proposed incentive schemes. Sources of information: Legislation and case law. Findings: Organ donation is governed by provincial legislation that, in general, bans the exchange of any “benefit” or any form of “valuable consideration” in return for an organ. As such, these laws are tremendously restrictive and could have significant implications for emerging and proposed procurement policy. Implications: Given the need for innovative, ethically appropriate policies to increase donation rates, we suggest that the time is right to rethink the potentially restrictive nature of Canada's organ donation laws.

The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy.