Timothy Caulfield

University of Alberta | UAlberta · Health Law and Science Policy Group

Background While 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...

Background Politicization and misinformation or disinformation of unproven COVID-19 therapies have resulted in communication challenges in presenting science to the public, especially in times of heightened public trepidation and uncertainty. Objective This study aims to examine how scientific evidence and uncertainty were portrayed in US news on...

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...

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...

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 the...

BACKGROUND While 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...

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 ana...

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...

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...

BACKGROUND Politicization and misinformation or disinformation of unproven COVID-19 therapies have resulted in communication challenges in presenting science to the public, especially in times of heightened public trepidation and uncertainty. OBJECTIVE This study aims to examine how scientific evidence and uncertainty were portrayed in US news on...

Direct-to-consumer genetic testing (DTC-GT) has rapidly become available and affordable throughout developed countries. However, comparative research on DTC-GT services beyond Western countries has remained scarce, particularly in East Asian countries such as Japan and China. Hence, this study’s hypothesis is that although DTC-GT services in three...

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.

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...

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 a...

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 headline...

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

Advances in immunology support the understanding that precise structural epitopes on the antibody-accessible region of the HLA molecule determine antigenicity and challenge the need for identity across the full HLA molecule to minimize graft immunogenicity. Retrospective studies confirm that quantitative measurement of epitope-level mismatching bet...

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 a...

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 me...

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...

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 bank...

The COVID-19 pandemic has created communication challenges exacerbated by the circulation of misinformation and the politicization of science. The case of hydroxychloroquine is an illustrative example, with the drug being aggressively promoted as a cure even while emerging evidence demonstrated the contrary. This research analyzed how hydroxychloro...

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) ar...

BACKGROUND The “infodemic” accompanying the SARS-CoV-2 virus pandemic has the potential to increase avoidable spread as well as engagement in risky health behaviours. While 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...

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 Y...

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 alternati...

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, twiste...

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 t...

Background 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 cro...

Objective: 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. Method: Content...

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 Canad...

Governments and financial institutions in several jurisdictions are planning or implementing nonmedical/'forced' switches by cutting drug coverage for reference biologics and funding only less expensive biosimilars. Switches raise numerous ethical and legal challenges, as the drugs are framed as not being identical and, despite strong evidence for...

“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 in...

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...

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 con...

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 regu...

Background: 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.Methods: We conducted a content analysis of 227 webpages compiled from Google searches in Canada and the US...

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 in...

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...

Aim: This study examined how umbilical cord blood (UCB) use was portrayed in the English language North American popular press. Methods: Directed content analysis was conducted on 400 articles from 2007 to 2017 containing ‘cord blood,’ published by the most read Canadian and American news sources. Results: A total of 86.3% of the articles detailed...

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, whi...

Background: . 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 sol...

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,...

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...

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...

Background 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. Methods A sample of 336 articles about medical crowdfunding published...

Supplementary materials. Intercoder Reliability Results and Coding Frame. (DOCX)

Purpose: CRISPR is often called one of the century's most important discoveries and is commonly discussed in terms of its momentous potential impacts. This study analyzed how CRISPR is discussed in the North American popular press, including how it is defined, and which benefits and risks/concerns are attributed to the technology. Methods: Using...

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 na...

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, suc...

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 T...

The field of regenerative medicine is widely viewed as having the potential to improve treatment options for a broad range of conditions. Stem cell research in particular has been celebrated for its considerable clinical promise. Although measured enthusiasm surrounding this area of research is warranted, it must be balanced by patience and set in...

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 Augus...

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. OBJECTIVE This study investigated how many clinics offering chiropractic in the Canadian province of Alberta promote a theory of subluxa...

Objective To identify the frequency and qualitative characteristics of stem cell-related marketing claims made on websites of clinics featuring common types of complementary and alternative medicine practitioners. The involvement of complementary and alternative medicine practitioners in the marketing of stem cell therapies and stem cell-related in...

p> OBJECTIVES: Public health policies have been criticized for promoting a simplistic narrative that may contribute to weight bias. Weight bias can impact population health by increasing morbidity and mortality. The objectives of this study were to: 1) critically analyze Canadian obesity prevention policies and strategies to identify underlying dom...

Purpose This study investigated the portrayal of “personalized” and “precision” medicine (PM) in North American news over the past decade. Content analysis of print and online news was conducted to determine how PM has been defined and to identify the frames used to discuss PM, including associated topics, benefits, and concerns. Methods A data se...

Aim: This study examines how stem cells and stem cell research are portrayed on websites deemed to be purveyors of distorted and dubious information. Methods: Content analysis was conducted on 224 articles from 2015 to 2016, compiled by searching with the keywords 'stem cell(s)' on a list of websites flagged for containing either 'fake' or 'junk...

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 vulnerabil...

Background: Because organ transplantation relies on public support for donation, an analysis of public discourse around organ donation is essential. We investigated the portrayal of family veto - when a family overrides the deceased person's prior legally executed wishes to donate - in Canadian news media. Methods: Using the Canadian Newsstream...

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 con...

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...

Supplementary methods. (PDF)

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,...

(Abstracted from J Obstet Gynaecol Can 2017;39(1):10–17) Noninvasive prenatal testing (NIPT) using cell-free DNA (cfDNA) is an exciting new technology with many potential clinical benefits. However, the commercialization of these tests and the potential economic benefits to the laboratories that perform the testing have led to concern that the limi...

Objective To identify the frequency and qualitative characteristics of marketing claims made by Canadian chiropractors, naturopaths, homeopaths and acupuncturists relating to the diagnosis and treatment of allergy and asthma. Design Cross-sectional study. Setting Canada. Data set 392 chiropractic, naturopathic, homeopathic and acupuncture clinic...

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...

Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the economic and near-future clinical benefits of NIPT have been overstated and the potential limitations and harms...

Background: The cystic fibrosis drug, Kalydeco, has attracted attention both for its effectiveness in particular CF patients and its substantial price tag. An analysis of newspaper portrayals of Kalydeco provides an opportunity to examine how policy issues associated with rare diseases and orphan drugs are being represented in the popular press....

Background: Former Detroit Red Wing Gordie Howe received stem cell (SC) treatment in Mexico in December 2014 for a stroke he suffered in October 2014. The news about his positive response to the SC treatment prompted discussion on social networks like Twitter. Objective: This study aims to provide information about discussions that took place on...

Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorders in the fetus and mass media may have an impact on shaping the public understanding of its promise and challenges. We conducted a content analysis of 173 news reports to examine how NIPT was portrayed in English-language media sources between January 1...

This review article considers ethical concerns when doing research on potentially vulnerable people who inject drugs (PWID) in a Canadian context. The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans broadly addresses many of the traditional ethical principles of research on vulnerable persons, but does so at the cost of...

Background The increasing push to commercialize university research has emerged as a significant science policy challenge. While the socio-economic benefits of increased and rapid research commercialization are often emphasized in policy statements and discussions, there is less mention or discussion of potential risks. In this paper, we highlight...

The recent Canadian lawsuit on patent infringement, filed by the Children's Hospital of Eastern Ontario (CHEO), has engendered a significant public debate on whether patenting genes should be legal in Canada. In part, this public debate has involved the use of social networking sites, such as Twitter. This case provides an opportunity to examine ho...

Previous studies have demonstrated how the media has an influence on policy decisions and healthcare coverage. Studies of Canadian media have shown that news coverage often emphasizes and hypes certain aspects of high profile health debates. We hypothesized that in Canadian media coverage of access to healthcare issues about therapies and technolog...

Stem cells continue to garner attention by the news media and play a role in public and policy discussions of emerging technologies. As new media platforms develop, it is important to understand how different news media represents emerging stem cell technologies and the role these play in public discussions. We conducted a comparative analysis of n...

Background: The hype surrounding stem cell science has created a market opportunity for the cosmetic industry. Cosmetic and anti-aging products and treatments that make claims regarding stem cell technology are increasingly popular, despite a lack of evidence for safety and efficacy of such products. Objectives: This study explores how stem cell...

In this Perspective, we examine the portrayal of translational stem cell research in major daily newspapers in Canada, the United States, and the United Kingdom between 2010 and 2013, focusing on how timelines for stem cell therapies were represented before and after Geron terminated its pioneering stem cell program. Our content analysis reveals th...