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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鈥檚 time, privacy, and dignity. This study affirms that Tijuana, Mexico, is a very popular destination for CAM cancer treatment.
Favorable Google listing reviews of alternative cancer clinics contribute to harmful online ecosystems. Reviews provide compelling narratives but are an ineffective indicator of treatment outcomes.
Does Amazon platform contain harmful cancer misinformation? This HLI study found that almost 50% cancer treatment books on Amazon contain misleading information, and 70% on first page of the results are bunk filled!
Understanding how to best identify and educate the public on the significant risks encountered with some AH therapeutics is an important part of health promotion.
"Most claims on hydroxychloroquine (79%) were offered by a 'prominent person,' of which 97% were from former US President Trump." "Despite the inclusion of scientific evidence, many claims of the safety and efficacy were made by nonexperts."
TikTok and the rapid spread of conspiracy theories
Media coverage affects policy and debates around organ donation and transplantation.
"For ethical guidelines to be effective, they need to speak to the contexts in which they are intended to be applied."
Reconsent of paediatric participants upon obtaining capacity should be explicit and informed.
"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."
Our new study, "The Hydroxychloroquine Twitter War", found that social media debate was both highly polarized and mostly about politics. Increasingly, the spread of misinformation is about ideological flags/in-group signaling.
"Regulation should emphasize patient agency and consent, and should encourage increasingly sophisticated methods of data anonymization and protection."
Bottom line: lots of GUT HYPE and little good science. "鈥楪ut health鈥 and the microbiome in the popular press: a content analysis"
COVID19 and Vitamin D Misinformation on YouTube.
A need understand alternative health care "not necessarily risk-free endeavours..."
Our new study found private cordblood banking companies pushed idea of high value for current future use. Websites did not typically foreground the likelihood of use (which is slight).
Let鈥檚 do better: public representations of COVID19 science
The protection of confidential research data is of key importance to clinical patient safety research.
To understand whether and how crowdfunding campaigns are a source of COVID-19鈥搑elated misinformation.
The study assessed how the Canadian print media represented essential healthcare services during the COVID-19 pandemic, including the controversial decision to include liquor and cannabis stores in essential services lists.
Complementary 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.
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 ten recommendations aimed at key actors involved in the communication of COVID-19 science, including government, funders, universities, publishers, media and the research communities.
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.
Regulatory T cells (Tregs) hold promise for cell-based therapies for autoimmunity and transplant rejection. In Canada, the potential collection, short-term banking, and transplantation of pediatric Tregs leftover from surgery raise legal and policy concerns. Tregs likely fall under the definitions of 鈥渢issue鈥 found in most provincial donation and transplantation statutes. With the exception of 黑料不打烊鈥檚 Human Tissue and Organ Donation Act, the fundamental distinction between donation of tissue primarily for transplantation and secondary donation of by-products of a medical intervention undertaken for the benefit of the donor is inadequately addressed in Canadian law. Most statutes prohibit transplantation except in accordance with their provisions and do not contemplate living donation by minors under a specific age. Provinces could amend their legislation in order to properly enable the transplantation of by-products like Tregs from infant donors. This process is relatively ethically uncontroversial, so if common research ethics and privacy concerns can be addressed, it should likely be permitted.
As the use of Non鈥怚nvasive Prenatal Testing (NIPT) increases, its benefits and concerns are being examined through surveys, qualitative studies and bioethical analysis. However, only scant research has examined public discourse on the topic. This research examined NIPT discussions on the social media platform Reddit.
Misinformation around CBD for cancer is widespread on medical crowdfunding campaigns. Given the potential adverse impact, crowdfunding platforms, like GoFundMe, must take steps to address their role in enabling and spreading this misinformation.
The concept of 鈥渋mmune boosting鈥 is scientifically misleading and often used to market unproven products and therapies. This paper presents an analysis of popular immune-boosting posts from Instagram.
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.
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.
One of the defining characteristics of this pandemic has been the spread of misinformation. Indeed, the World Health Organization famously called the crisis not just a pandemic, but also an 鈥渋nfodemic.鈥 Why and how misinformation spreads and has an impact on behaviours and beliefs is a complex and multidimensional phenomenon. And there is an...
In sum, the law will define and bound the acceptable behaviour of physicians recommending or administering NIPS, and nudge the technology's implementation forward. Physicians and policymakers should be aware of the potential impact of these legal norms on both utilization and public expectations.
The scientific community must take up cudgels in the battle against bunk.
L鈥檕bligation de pr茅server la vie priv茅e des patients et des participants 脿 la recherche est fondamentale en recherche biom茅dicale.
March 20, 2020 Timothy Caulfield, Blake Murdoch, Ruth Sapir-Pichhadze, Paul Keown
Alternative medicine practitioners are leveraging the fear around coronavirus to sell products and procedures that are scientifically unproven.
Findings demonstrate the need for continual monitoring of the media portrayals of UCB as stem cell and transplantation research develops and as clinics continue to operate.
An in depth look in the implementation of nonmedical/'forced' switches by cutting drug coverage for reference biologics and funding only less expensive biosimilars. B Murdoch, T Caulfield January 3, 2020
Two stories of public solicitation for living liver donors received substantial Canadian media attention in 2015: The Wagner family, with twin toddlers, each needing transplants, and Eugene Melnyk, wealthy owner of a professional hockey team. This study compared the print media coverage of these 2 stories to understand how public solicitation was portrayed and whether coverage differed depending on the individual making the plea. A Marcon, T Caulfield, M Toews December 2019
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. Alessandro Marcon, Blake Murdoch, Timothy Caulfield November 2019
Timothy Caulfield Special to the Globe and Mail Published July 10, 2019
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. Bethany Hawke, Alexandra R Przybylo, Danielle Paciulli, Timothy Caulfield, Amy Zarzeczny, Zubin Master
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.
Boyer, Graham; Caulfield, Timothy, BSc, LLB, LLM; Green, Peter H. R., MD; Lebwohl, Benjamin, MD, MS
Medical 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. B Murdoch, A Marcon, D Downie, T Caulfield.
Alessandro Marcon, Zubin Master, Vardit Ravitsky, and Timothy Caulfield.
Crowdfunding platforms have a role to play in countering the misinformation spread by campaigns that raise money for unproven homeopathic treatments. Timothy Caulfield, Jeremy Snyder.
Jeremy Snyder, Timothy Caulfield.
Our recent study found much of the media coverage of flu vaccine to be accurate/positive. We speculate misinformation coming from other sources (social media, alt med marketing, etc.) Timothy Caulfield.
Column by Timothy Caulfield. November 6, 2018
There is a growing body of literature that describes both the degree to which science is hyped and how and why that hype happens. Hype can be described as an inappropriate exaggeration of the significance or potential value of a particular study or area of science. Evidence tells us that this spin happens throughout the science translation process. There is hype in research grants, peer-reviewed publications, scientific abstracts, institutional press releases, media representations, and, of course, in the associated marketing of a new product. There is also evidence that it has played a particularly significant role in the area of genetic research. Science hype is a complex phenomenon that involves many actors. And it is, at least to some degree, the result of systemic pressures imbedded in the current incentives associated with biomedical research. This article reviews what the evidence says about the sources of hype, the social and scientific harms, and what can be done to nudge us in the right direction.
Blake Murdoch, Amy Zarzeczny, Timothy Caulfield
Research in which healthy volunteers are exposed to pathogens or other aetiologic agents that may cause disease remains controversial. Proponents suggest such work is key to understanding pathways of infection and the efficacy of vaccines and treatments. Yet, this research creates ethical and legal issues surrounding consent, participant vulnerability and the potential for harm. Moreover, public trust in research could be compromised if avoidable, serious harm occurs, making challenge research risky. Among Canadian research ethics guidelines, overarching messages are that participant interests cannot be subservient to those of research and that risks must be proportional to likely benefits. Moreover, common law fiduciary obligations to clinical research participants and the deterrent effect of potential tortious or criminal negligence act to reinforce the idea that challenge protocols should be a strategy of last resort. Researchers could benefit from clear guidance directly addressing the unique issues with challenge research.
Publication by Blake Murdoch and Timothy Caulfield.
Looking at the proliferation of unproven stem cells marketed direct to consumers we identified some "Co-opted tokens of scientific legitimacy鈥
Little evidence to support much of what naturopaths offer. And the sensible advice (exercise, sleep) often wrapped in a blanket of pseudoscience.
This Fast Fact briefly explains the framework and implications of opt-out consent for deceased organ donation, describes the social and legal challenges with adopting an opt-out consent model in Canada and raises important questions to consider. Produced by Maeghan Toews with the input from the CNTRP team and with support from Canadian Blood Services.
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.
Professor Ogbogu proposes the adoption and application of consumer protection legal frameworks, specifically truthful advertising laws and enforcement strategies, as a means of combating the proliferation of clinics offering and providing unproven and unlicensed stem cell interventions to the public.
Complementary medicine Research
Professor Timothy Caulfield transcribes Celebrity and Health Behaviours and Beliefs, Inaccurate and Uncritical Portrayals, Celebrities and the "Prius Effect", Our Celebrity-Filled Future, and Celebrity Conundrum.
2016 B Murdoch, T Caulfield. This review article considers ethical concerns when doing research on potentially vulnerable people who inject drugs (PWID) in a Canadian context.
Spinal manipulation therapy (SMT) is a popular though controversial practice. The debates surrounding efficacy and risk of SMT are only partially evident in popular discourse.
By Professor Vardit Ravitsky, Professor Bartha Knoppers, Professor Timothy Caulfield, Professor Rosario Isasi, Erika Kleiderman, and Professor Michael Rudnicki
Timothy Caulfield and Declan Fahy on Science, Celebrities, and Public Engagement in the Summer 2016 Issues in Science and Technology. (www.issues.org)
Professor Timothy Caulfield co-authors new stem cell policy guidelines.
Timothy Caulfield is a Canada Research Chair in Health Law and Policy at the 黑料不打烊, a Trudeau Fellow and the author of "Is Gwyneth Paltrow Wrong About Everything?: When Celebrity Culture And Science Clash" (Penguin, 2015).
Rachul CM, Percec I, Caulfield T
Wake Forest Journal of Law & Policy
Ethics and Genomic Incidental Findings
The American College of Medical Genetics and Genomics (ACMG) recently issued a statement (1) recommending that all laboratories conducting clinical sequencing seek and report pathogenic and expected pathogenic mutations for a short list of carefully chosen genes and conditions....
Aim: To determine whether increased scrutiny of 'stem cell tourism' has resulted in changes to online claims by clinics that provide putative unproven stem cell treatments. Materials & methods: We analyzed historical and current versions of clinics' websites. The study sample consisted of 18 websites included in a 2008 peer-reviewed study and an additional 12 clinics identified through the Google鈩 search engine...
Naturopaths provide unproven therapies
Effective science communication is about more than addressing info deficits.