Publications
Recent Posts
Facets: Let’s do better: public representations of COVID-19 science
Let’s do better: public representations of COVID19 science
Journal of Patient Safety: Compelled Disclosure of Confidential Information in Patient Safety Research
The protection of confidential research data is of key importance to clinical patient safety research.
American Public Health Association: Crowdfunding Campaigns and COVID-19 Misinformation
To understand whether and how crowdfunding campaigns are a source of COVID-19–related misinformation.
BMC Public Health: Media representations of COVID-19 public health policies: assessing the portrayal of essential health services in Canadian print media
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.
PLOS One: Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?
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.
RSC Policy Briefing: Let's Do Better: Public Representations of COVID-19 Science
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.
BMJ: COVID-19 and ‘immune boosting’ on the internet: a content analysis of Google search results
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.
Medical Law International: The legal and policy considerations of transplanting pediatric thymus regulatory T cells as an immunotherapy in Canada
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 “tissue” found in most provincial donation and transplantation statutes. With the exception of Alberta’s 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.
Obstetrics and Gynaecology: Discussing NIPT on Reddit: The benefits, the concerns, the comradery
As the use of Non‐Invasive 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.
American Journal of Public Health: Crowdfunding Cannabidiol (CBD) for Cancer: Hype and Misinformation on GoFundMe
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.
Bio Med Central: “Immune Boosting” in the time of COVID: selling immunity on Instagram
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.
Taylor & Francis Online: The consumer representation of DNA ancestry testing on YouTube
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.
BMC Medical Ethics: The law and problematic marketing by private umbilical cord blood banks
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.
OSF PrePrints: Does Debunking Work? Correcting COVID-19 Misinformation on Social Media
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 “infodemic.” Why and how misinformation spreads and has an impact on behaviours and beliefs is a complex and multidimensional phenomenon. And there is an...
JOGC: Non-Invasive Prenatal Screening: Navigating the Relevant Legal Norms
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.
Nature: Pseudoscience and COVID-19 — we’ve had enough already
The scientific community must take up cudgels in the battle against bunk.
Érudit: Research, Digital Health Information and Promises of Privacy: Revisiting the Issue of Consent
L’obligation de préserver la vie privée des patients et des participants à la recherche est fondamentale en recherche biomédicale.
Canadian Journal of Kidney Health and Disease: Policy Challenges for Organ Allocation in an Era of "Precision Medicine"
March 20, 2020 Timothy Caulfield, Blake Murdoch, Ruth Sapir-Pichhadze, Paul Keown
Policy Options: misinformation, alternative medicine and the coronavirus
Alternative medicine practitioners are leveraging the fear around coronavirus to sell products and procedures that are scientifically unproven.
Future Medicine: Portrayal of umbilical cord blood research in the North American popular press: promise or hype?
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.
Journal of the Canadian Association of Gastroenterology: The Law and Ethics of Switching from Biologic to Biosimilar in Canada
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
Transplantation Direct: Public Solicitation and The Canadian Media: Two Cases of Living Liver Donation, Two Different Stories
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
BioMedCentral: Archives of Physiotherapy: The "subluxation" issue: an analysis of chiropractic clinic websites
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
The Globe and Mail: Unproven stem-cell treatments can be dangerous. The hype needs to stop
Timothy Caulfield Special to the Globe and Mail Published July 10, 2019
Stem Cell Reports: How to Peddle Hope: An Analysis of YouTube Patient Testimonials of Unproven Stem Cell Treatments
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
Canadian Journal of Bioethics: Health Misinformation and the Power of Narrative Messaging in the Public Sphere
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.
The American Journal of Gastroenterology: Promotion of Testing for Celiac Disease and the Gluten-Free Diet Among Complementary and Alternative Medicine Practitioners
Boyer, Graham; Caulfield, Timothy, BSc, LLB, LLM; Green, Peter H. R., MD; Lebwohl, Benjamin, MD, MS
PLOS: Media portrayal of illness-related medical crowdfunding: A content analysis of newspaper articles in the United States and Canada
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.
Genetics in Medicine: CRISPR in the North American popular press
Alessandro Marcon, Zubin Master, Vardit Ravitsky, and Timothy Caulfield.
Policy Options: When crowdfunding pays for bunk medical treatments
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.
The Lancet Oncology: Patients' crowdfunding campaigns for alternative cancer treatments
Jeremy Snyder, Timothy Caulfield.
NCBI NLM National Institute of Health: Influenza vaccination discourse in major Canadian news media, 2017-2018
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.
Policy Options: Vaccines, public trust and learning from my hate mail
Column by Timothy Caulfield. November 6, 2018
NLM: Spinning the Genome: Why Science Hype Matters
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.
BMJ Open: Exploiting science? A systematic analysis of complementary and alternative medicine clinic websites' marketing of stem cell therapies
Blake Murdoch, Amy Zarzeczny, Timothy Caulfield
Medical Law International: The challenge of human challenge research models: A Canadian perspective
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.
Sage Journals: Pragmatic clinical trials and the consent process
Publication by Blake Murdoch and Timothy Caulfield.
Journal of Law and Biosciences: Injecting doubt: responding to the naturopathic anti-vaccination rhetoric
Little evidence to support much of what naturopaths offer. And the sensible advice (exercise, sleep) often wrapped in a blanket of pseudoscience.
CNTRP: Understanding Opt-Out or Presumed Consent - what are the challenges and how would it work in Canada?
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.
Cogent Medicine: Commenting on chiropractic: A YouTube analysis
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.
Combatting Unlicensed Stem Cell Interventions through Truthful Advertising Law: A Survey of Regulatory Trends
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.
From Kim Kardashian to Dr. Oz: The Future Relevance of Popular Culture to Our Health and Health Policy
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.
Bioéthique Online: Doing Research with Vulnerable Populations: The Case of Intravenous Drug Users
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.
JMIR: Chiropractic and Spinal Manipulation Therapy on Twitter: Case Study Examining the Presence of Critiques and Debates
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.
BioNews: Event Review: Gene editing - exploring the Canadian context
By Professor Vardit Ravitsky, Professor Bartha Knoppers, Professor Timothy Caulfield, Professor Rosario Isasi, Erika Kleiderman, and Professor Michael Rudnicki
Issues In Science and Technology: Science, Celebrities, and Public Engagement
Timothy Caulfield and Declan Fahy on Science, Celebrities, and Public Engagement in the Summer 2016 Issues in Science and Technology. (www.issues.org)
Science: Confronting stem cell hype
Professor Timothy Caulfield co-authors new stem cell policy guidelines.
The BMJ Opinion: Timothy Caulfield: The straw men of integrative health and alternative medicine
Timothy Caulfield is a Canada Research Chair in Health Law and Policy at the University of Alberta, a Trudeau Fellow and the author of "Is Gwyneth Paltrow Wrong About Everything?: When Celebrity Culture And Science Clash" (Penguin, 2015).
BMC Medical Ethics: The commercialization of university-based research: Balancing risks and benefits
NCBI National Library of Medicine National Institutes of Health: The Fountain of Stem Cell-Based Youth? Online Portrayals of Anti-Aging Stem Cell Technologies.
Rachul CM, Percec I, Caulfield T
The Obesity Gene and the (Misplaced) Search for a Personalized Approach to Our Weight Gain Problems
Wake Forest Journal of Law & Policy
BMJ Open: Representations of the health value of vitamin D supplementation in newspapers: media content analysis
To examine the nature of media coverage of vitamin D in relation to its role in health and the need for supplements.
Ocular gene transfer in the spotlight: implications of newspaper content for clinical communications
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....
Reassessing direct-to-consumer portrayals of unproven stem cell therapies: is it getting better?
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™ search engine...
The Assisted Human Reproduction Act Reference and the Thin Line Between Health and Crime
When should health be treated as a subject of criminal law? With respect to health, the Constitution Act, 18671 does not specifically assign legislative authority to any level of government.2 As a result, Parliament and provincial legislatures can enact laws relating to health...