Communicating About Precision Transplantation Tools.

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.

Motif de la revue: Les outils de précision assurant la compatibilité moléculaire peuvent aider à prévenir le rejet et à améliorer les résultats de la transplantation rénale. Or, ces outils susciteront une controverse parce qu'ils sont perçus comme ayant une incidence sur l'équité dans l'éthique de l'allocation, et qu'ils peuvent effectivement en avoir une. Ces outils sont également susceptibles d'influer sur les limites au sein desquelles les médecins peuvent défendre les intérêts de leurs patients fiduciaires, comme l'exigent l'éthique professionnelle et le droit canadien. Sources: Des bases de données électroniques telles que Google Scholar et PubMed ont été consultées à la recherche de la documentation évaluée par des pairs. Le moteur de recherche Google a servi à répertorier les articles de presse, la jurisprudence, les informations juridiques et les autres sites Web pertinents cités. Méthodologie: Nous discutons des controverses qui seront vraisemblablement générées par les nouveaux outils de précision liés à la transplantation. Nous examinons également les défis qui découleront de leur mise en œuvre et nous formulons des recommandations sur les stratégies et le contenu à adopter dans les communications qui aborderont ces questions. Principales observations: La communication entourant l'application des nouveaux outils de précision posera un défi, car les représentations médiatiques de la transplantation se concentrent le plus souvent sur des récits individuels liés à l'accès à la transplantation, et ne mettent pas en lumière les problèmes liés à l'utilité, l'attribution et le rejet. Ces représentations incomplètes devront être contrebalancées par des explications sur la façon dont les nouveaux outils de précision pourront être bénéfiques s'ils sont mis en œuvre équitablement; car il est essentiel de maintenir la confiance dans le système de don et de transplantation. Limites: Notre article porte sur les applications de la médecine de précision en lien avec la mise en œuvre d'outils mesurant la compatibilité moléculaire en transplantation. Il faudra possiblement envisager des stratégies et un contenu de communication distincts dans d'autres contextes. Conclusion: Une stratégie de communication claire et précise est essentielle pour gérer l'application des outils de la médecine de précision. À cette fin, nous fournissons des recommandations détaillées sur l'engagement des intervenants, ainsi qu'en matière de contenu et de stratégies pour les communications liées aux nouveaux outils de précision en transplantation.

The portrayal of organ donation on TikTok: A content analysis of popular English-language TikTok videos.

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.

Ethically cleared to launch?

Rules are needed for human research in commercial spaceflight.

Demographic and psychometric predictors associated with engagement in risk-associated alternative healthcare behaviours.

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.

The influence of sociodemographic factors on COVID-19 vaccine certificate acceptance: A cross-sectional study.

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 < .001), rurality (p < .001), political ideology (p < .001), age (p < .001), having children under 18 in the household (p < .001), education (p = .014), and income status (p = .034) were significant predictors of attitudes toward COVID-19 vaccine certificates. We observed the lowest vaccine-certificate approval among participants who: self-identify as a visible minority; live in rural areas; are politically conservative; are 18-34 years of age; have children under age 18 living in the household; have completed an apprenticeship or trades education; and those with an annual income between $100,000-$159,999. The present findings are valuable for their ability to inform the implementation of vaccine certificates during future pandemic scenarios which may require targeted communication between public health agencies and under-vaccinated populations.

Advertising Alternative Cancer Treatments and Approaches on Meta Social Media Platforms: Content Analysis.

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.

Reconsenting paediatric research participants for use of identifying data.

When a minor research participant reaches the age of majority or the level of maturity necessary to be granted legal decision-making capacity, reconsent can be required for ongoing participation in research or use of health information and banked biological materials. Despite potential logistical concerns with implementation and ethical questions about the trade-offs between maximising respect for participant agency and facilitating research that may generate benefits, reconsent is the approach most consistent with both law and research ethics.Canadian common law consent requirements are expansive and likely compel reconsent on obtaining capacity. Common law doctrine recognises that children are entitled to decision-making authority that reflects their evolving intelligence and understanding. Health consent legislation varies by province but generally either compels reconsent on obtaining capacity or delegates the ability to determine reconsent to research ethics boards. These boards largely rely on the Canada's national ethics policy, the Tri-Council Policy Statement, which states that, with few exceptions, reconsent for continued participation is required when minors gain capacity that would allow them to consent to the research in which they participate. A strict interpretation of this policy could require researchers to perform frequent capacity assessments, potentially presenting feasibility concerns. In addition, Canadian policy and law are generally consistent with the core principles of key international ethical standards from the United Nations and elsewhere.In sum, reconsent of paediatric participants upon obtaining capacity should be explicit and informed in Canada, and should not be presumed from continued participation alone.

Newspaper Coverage of COVID-19 Vaccination Requirement for Organ Transplant.

This qualitative study summarizes newspaper reporting on views supporting or opposing policies requiring COVID-19 vaccination for organ transplant candidates in the US, the UK, and Canada.

Donation and transplantation coverage in the Canadian media: a content analysis of story focus over 2 decades.

Media coverage affects policy and debates around organ donation and transplantation. We performed a content analysis of stories in the Canadian popular press with a focus on organ donation and transplantation. We built a data set of articles published between Jan. 1, 2000, and May 7, 2019, that included 2082 articles, and we assessed their headlines and lead paragraphs to determine the stories' focus and tone. The most common topics were recipients and donors (46.4%), policy (31.6%) and raising awareness/funds (26.6%). The tone of the articles was positive in 39.1%, neutral in 34.4%, and negative in 26.5%. The strong focus on patients in the reporting may be clouding critical policy discussions. Health communicators and policy-makers should continually assess how to create engaging messaging that remains accurate.

Using Data From a Short Video Social Media Platform to Identify Emergent Monkeypox Conspiracy Theories.

This qualitative study investigates emergent conspiracy theories about monkeypox collected from content and metadata posted by users of a social media video app.

Diversifying stem cell debates: Including Muslim contexts and perspectives.

Greater transcultural and transdisciplinary engagement within Muslim contexts and deliberate inclusion of diverse Muslim voices in the development of international guidelines is required to improve understanding of the state of stem cell science, strengthen thinking about attendant ethical complexities, enhance compliance, deepen public deliberation, increase trust, and strengthen practice standards.

COVID-19 and Vitamin D Misinformation on YouTube: Content Analysis.

Background: The "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. Objective: The aim of this study was to ascertain how information on vitamin D and COVID-19 was presented on YouTube in 2020. Methods: YouTube 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. Results: In 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. Conclusions: The 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.

A taxonomy of risk-associated alternative health practices: A Delphi study.

Defining alternative health care and the recording of associated adverse events and harm remains problematic. This Canadian study aimed to establish and classify risk-associated alternative health practices in a Delphi study undertaken with an interdisciplinary panel of 17 health experts in 2020. It provides a new functional definition of alternative health care and an initial taxonomy of risk-associated alternative health care practices. A number of risk-associated practices were identified and categorized into general practices that conflict with biomedical care or largely untested therapies, alternative beliefs systems, physical manipulative alternative therapies, and herbal and nutritional supplements. Some risk significant harms including major physical injuries or even death. The lack of systematic methods for recording adverse events in alternative health care makes establishing the frequency of such events challenging. However, it is important that people engaging with alternative health care understand they are not necessarily risk-free endeavours, and what those risks are.

Analyzing natural herd immunity media discourse in the United Kingdom and the United States.

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.

'Gut health' and the microbiome in the popular press: a content analysis.

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.

Peddling promise? An analysis of private umbilical cord blood banking company websites in Canada.

Private umbilical cord blood banking is growing around the world. A family's decision to bank cord blood publicly or privately can be influenced by numerous sources including healthcare practitioners, personal networks, the popular press, social media and marketing discourse from private entities. Issues have been raised concerning how private banks market their services, particularly with regards to the likelihood of use and for what purposes cord blood can be used. The objective of this study was to analyze the marketing on the seven company websites offering private cord blood storage in Canada. We performed a mix of content and general qualitative analysis on the seven websites. Our analysis shows substantial hype around cord blood uses, amplifying the promise of speculative uses and distorting the likelihood of use. Findings show that this promotional messaging often deploys communication strategies which draw on testimonials and emotionally-charged narratives. Questions should be asked about whether the promissory aspects of these websites constitute breaches of Canadian law or regulation. Careful monitoring of the private cord blood space is important for ensuring that the Canadian public is adequately and accurately informed of the services being offered.

Crowdfunding Campaigns and COVID-19 Misinformation.

Objectives. To understand whether and how crowdfunding campaigns are a source of COVID-19-related misinformation.Methods. We searched the GoFundMe crowdfunding platform using 172 terms associated with medical misinformation about COVID-19 prophylaxes and treatments. We screened resulting campaigns for those making statements about the ability of these searched-for or related terms to prevent or treat COVID-19.Results. There were 208 campaigns worldwide that requested $21 475 568, raised $324 305 from 4367 donors, and were shared 24 158 times. The most discussed interventions were dietary supplements and purported immune system boosters (n = 231), followed by other forms of complementary and alternative medicine (n = 24), and unproven medical interventions (n = 15). Most (82.2%) of the campaigns made definitive efficacy claims.Conclusions. Campaigners focused their efforts on dietary supplements and immune system boosters. Campaigns for purported COVID-19 treatments are particularly concerning, but purported prophylaxes could also distract from known effective preventative approaches. GoFundMe should join other online and social media platforms to actively restrict campaigns that spread misinformation about COVID-19 or seek to better inform campaigners about evidence-based prophylaxes and treatments.

Compelled Disclosure of Confidential Information in Patient Safety Research.

ABSTRACT: The protection of confidential research data is of key importance to clinical patient safety research. A review of selected Canadian and American case law indicates that although the relationship between researcher and participant has not been recognized as privileged, court-ordered disclosure of confidential research information seems to be a rare occurrence. In this review, we examine how confidentiality issues are presented in informed consent form templates and in relevant research ethics policies. We find an agreement among research policy documents that all information gathered should be treated as confidential, unless otherwise required by law. Confidentiality provisions in informed consent forms reflect the reality that in some cases, the law can compel disclosure of confidential data. There is, therefore, a potential tension between the law and existing research ethics policy. It has been suggested that researchers have an ethical and possibly legal duty to actively resist disclosure requests. We conclude that it is reasonable for researchers to disclose, as part of the informed consent process, how rare successful disclosure demands are and that steps will be taken to oppose such demands.