Tania Bubela

Do the print media “hype” genetic research? A comparison of newspaper stories and peer-reviewed research papers

Background: The public gets most of its information about genetic research from the media. It has been suggested that media representations may involve exaggeration, called “genohype.” To examine the accuracy and nature of media coverage of genetic research, we reviewed the reporting of single-gene discoveries and associated technologies in major daily newspapers in Canada, the United States, Great Britain and Australia. Methods: We used neutral search terms to identify articles about gene discoveries and associated technologies hosted on the Dow Jones Interactive and Canadian NewsDisk databases from January 1995 to June 2001. We compared the contents, claims and conclusions of the scientific journal article with those of the associated newspaper article. Coders subjectively assigned the newspaper articles to 1 of 3 categories: moderately to highly exaggerated claims, slightly exaggerated claims or no exaggerated claims. We used classification tree software to identify the variables that contributed to the assignment of each newspaper article to 1 of the 3 categories: attention structure (positioning in the newspaper and length of the article), authorship, research topic, source of information other than the scientific paper, type and likelihood of risks and benefits, discussion of controversy, valuation tone (positive or negative), framing (e.g., description of research, celebration of progress, report of economic prospects or ethical perspective), technical accuracy (either omissions or errors that changed the description of the methods or interpretation of the results) and use of metaphors. Results: We examined 627 newspaper articles reporting on 111 papers published in 24 scientific and medical journals. Only 11% of the newspaper articles were categorized as having moderately to highly exaggerated claims; the majority were categorized as having no claims (63%) or slightly exaggerated claims (26%). The classification analysis ranked the reporting of risks as the most important variable in determining the categorization of newspaper articles. Only 15% of the newspaper articles and 5% of the scientific journal articles discussed costs or risks, whereas 97% of the newspaper articles and 98% of the scientific journal articles discussed the likelihood of benefits of the research. Interpretation: Our data suggest that the majority of newspaper articles accurately convey the results of and reflect the claims made in scientific journal articles. Our study also highlights an overemphasis on benefits and under-representation of risks in both scientific and newspaper articles. The cause and nature of this trend is uncertain.

Science communication reconsidered

As new media proliferate and the publics trust and engagement in science are influenced by industry involvement in academic research, an interdisciplinary workshop provides some recommendations to enhance science communication.

Post-publication sharing of data and tools

Despite existing guidelines on access to data and bioresources, good practice is not widespread. A meeting of mouse researchers in Rome proposes ways to promote a culture of sharing.

The global landscape of stem cell clinical trials

AIM To provide a comprehensive analysis of clinical trials (CTs) listed in worldwide registries involving new applications for stem cell-based treatments and account for the role of industry. MATERIALS & METHODS We developed a data set of 4749 stem cell CTs up to 2013 in worldwide registries. We defined 1058 novel CTs (i.e., trials that were not observational in nature; did not involve an established stem cell therapy for an established indication, such as hematopoietic stem cells for leukemia; and did not investigate supportive measures). Based on trial descriptions, we manually coded these for eight additional elements. RESULTS Our analysis details the characteristics of novel stem cell CTs (e.g., stem cell types being tested, disease being targeted, and whether interventions were autologous or allogeneic), geotemporal trends, and private sector involvement as sponsor or collaborator. CONCLUSION The field is progressing at a steady pace with emerging business models for stem cell therapeutics. However, therapeutic rhetoric must be tempered to reflect current clinical and research realities.

Reflections on the Cost of "Low-Cost" Whole Genome Sequencing: Framing the Health Policy Debate

The future clinical applications of whole genome sequencing come with speculation and enthusiasm but require careful consideration of the true system costs and health benefits of the clinical uses of this exciting technology.

Myriad and the mass media: the covering of a gene patent controversy

Purpose: We explore how the print media in four jurisdictions framed the controversy surrounding Myriad Genetics BRCA patents and consider the possible influence of media on public perceptions and policy reform.Method: We used a broad search strategy to collect newspaper articles from Factiva and Lexis/Nexis on Myriad Genetics and the BRCA gene and identified the main triggers for those articles. We then selected articles on the BRCA gene patents for coding. The coding frame queried the presence or absence of either positive or negative statements about gene patenting and a subjective assessment of the tone of the article. We compared the differences in tone and number of positive and negative statements between jurisdictions (Australia, Canada, United Kingdom, and United States).Results: Myriad Genetics BRCA1/2 gene patents sparked significant international newspaper coverage in comparison to other stories on gene patenting controversies. Only 55.9% of 143 articles presented a variety of perspectives. The majority of articles (77.6%) had a negative overall tenor; only 6.29% had a positive overall tenor, whereas 16.1% were neutral. There were significant differences in the overall tenor between jurisdictions, with Canadian coverage being overwhelmingly negative in comparison with the other three jurisdictions. The main triggers for news coverage were largely local licensing deals, actions at regional patent offices, and statements and publications by prominent figures.Conclusion: Myriads patents were largely portrayed as a negative story, except in Utah where Myriad Genetics is located, and as an example of the problems associated with gene patents. The story was primarily framed as a social dilemma that needed to be addressed. In Canada there was a disproportionate level of coverage of the political response to the threat of patent infringement action against government testing laboratories and potential impacts on public health care. In Europe and elsewhere in the United States, the opposition to gene patenting at the European Patent Office predominated. In these contexts, our data provide some support that the media coverage helped to drive the policy agenda, although the resultant policy response received almost no media attention.

The Stem Cell Research Environment: A Patchwork of Patchworks

Few areas of recent research have received as much focus or generated as much excitement and debate as stem cell research. Hope for the therapeutic promise of this field has been matched by social concern associated largely with the sources of stem cells and their uses. This interplay between promise and controversy has contributed to the enormous variation that exists among the environments in which stem cell research is conducted throughout the world. This variation is layered upon intra-jurisdictional policies that are also often complex and in flux, resulting in what we term a ‘patchwork of patchworks’. This patchwork of patchworks and its implications will become increasingly important as we enter this new era of stem cell research. The current progression towards translational and clinical research among international collaborators serves as a catalyst for identifying potential policy conflict and makes it imperative to address jurisdictional variability in stem cell research environments. The existing patchworks seen in contemporary stem cell research environments provide a valuable opportunity to consider how variations in regulations and policies across and within jurisdictions influence research efficiencies and directions. In one sense, the stem cell research context can be viewed as a living experiment occurring across the globe. The lessons to be gleaned from examining this field have great potential for broad-ranging general science policy application.

Why a criminal ban? Analyzing the arguments against somatic cell nuclear transfer in the Canadian parliamentary debate.

Somatic cell nuclear transfer (SCNT) remains a controversial technique, one that has elicited a variety of regulatory responses throughout the world. On March 29, 2005, Canadas Assisted Human Reproduction Act came into force. This law prohibits a number of research activities, including SCNT. Given the pluralistic nature of Canadian society, the creation of this law stands as an interesting case study of the policy-making process and how and why a liberal democracy ends up making the relatively rare decision to use a statutory prohibition, backed by severe penalties, to stop a particular scientific activity. In this article, we provide a comprehensive and systematic legal analysis of the legislative process and parliamentary debates associated with the passage of this law.

Commercialization and Collaboration: Competing Policies in Publicly Funded Stem Cell Research?

Advances in bibliometrics present new methods for analyzing emerging collaborative innovation models. These methods are illustrated by the Canadian Stem Cell Network, which fosters high-profile multidisciplinary, collaborative, international research. However, patenting negatively impacts collaboration patterns in published research. Policies directed at collaboration and commercialization may be in conflict, depending on the degree to which one activity is emphasized over the other.

Science communication in transition: genomics hype, public engagement, education and commercialization pressures

This essay reports on the final session of a 2‐day workshop entitled ‘Genetic Diversity and Science Communication’, hosted by the CIHR Institute of Genetics in Toronto, April 2006. The first speaker, Timothy Caulfield, introduced the intersecting communities that promulgate a ‘cycle of hype’ of the timelines and expected outcomes of the Human Genome Project (HGP): scientists, the media and the public. Other actors also contribute to the overall hype, the social science and humanities communities, industry and politicians. There currently appears to be an abatement of the overblown rhetoric of the HGP. As pointed out by the second speaker, Sharon Kardia, there is broad recognition that most phenotypic traits, including disease susceptibility are multi‐factorial. That said, George Davey‐Smith reminded us that some direct genotype–phenotype associations may be useful for public health issues. The Mendelian randomization approach hopes to revitalize the discipline of epidemiology by strengthening causal influences about environmentally modifiable risk factors. A more realistic informational environment paves the way for greater public engagement in science policy. Two such initiatives were presented by Kardia and Jason Robert, and Peter Finegold emphasized that science education and professional development for science teachers are important components of later public engagement in science issues. However, pressures on public research institutions to commercialize and seek industry funding may have negative impacts in both encouraging scientists to inappropriately hype research and on diminishing public trust in the scientific enterprise. The latter may have a significant effect on public engagement processes, such as those proposed by Robert and Kardia.