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BACKGROUND: Complementary 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. OBJECTIVE: The 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. METHODS: We 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. RESULTS: Patients 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%). CONCLUSIONS: These 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.
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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 Åuvre 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 Åuvre 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 Åuvre 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.
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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.
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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.
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Increasingly, the question of whether some forms of research, such as human cloning, infringe notions of human dignity has been proposed as a primary justification for the development of science policy. This is understandable. A commitment to human dignity is a widely shared value and the foundation for our understanding of human rights. The preamble to the Universal Declaration of Human Rights, adopted by the United Nations General Assembly in 1948, states that "recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice, and peace in the world". However, in the context of emerging scientific advances, such as cloning technology and stem cell research, exactly how to judge whether human dignity is infringed upon or degraded is rarely explained. As an example, a 2002 report by the President's Council on Bioethics is titled "Human Cloning and Human Dignity: An Ethical Inquiry," but it fails to conceptualize human dignity or address the specific ways in which human cloning may impinge on human dignity. This lack of clarity has the potential to hurt policymaking and, in the long run, degrade the possible substantive value of the principle of human dignity. The dilemma is that human dignity is a poorly conceptualized and vague concept. Further complicating matters, in a pluralistic society various groups and communities bring a diversity of worldviews, religious values, and cultural understandings that inform and shape their use of the concept of human dignity.