Timothy Caulfield

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.

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

Interest in whole-genome research has grown substantially over the past few months. This article explores the challenging ethics issues associated with this work.

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.

Deflating the Genomic Bubble

Unrealistic expectations and uncritical translation of genetic discoveries may undermine other promising approaches to preventing disease and improving health. “Soccer is the sport of the future in America … and it always will be.” This oft-quoted epithet poking fun at the promise of the “beautiful game” in the United States can seem uncomfortably apt when applied to genomic medicine. Its now been 10 years since humans deciphered the digital code that defines us as a species. Although it may be hard to overestimate the significance of that achievement, it is easy to misconstrue its meaning and promise. People argue about whether mapping the human genome was worth the investment (1–3). With global funding for genomics approaching

Ethics and Genomic Incidental Findings

3 billion/year (4), some wonder what became of all the genomic medicine we were promised (5). It thus seems an appropriate time to take stock of whence the real benefits from genomic research may come and how best to attain a future in which genomics improves human health.

DNA databanks and consent: A suggested policy option involving an authorization model

Laboratories have an obligation to report clinically beneficial 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. The recommendations establish a baseline for reporting clinically relevant incidental findings and articulate ethical principles relevant to their disclosure. The ACMG acknowledged that the list will evolve over time and is developing a mechanism for community input (2). This paper focuses on the ethical framework for the recommendations, rather than on the choice of which genes to include on the list.

Evidence and anecdotes: an analysis of human gene patenting controversies

BackgroundGenetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material.DiscussionIn this paper, we discuss the difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research.SummaryThe authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required.

Direct-to-Consumer Genetic Testing: Perceptions, Problems, and Policy Responses

When it comes to gene patenting, policy makers may be responding more to high-profile media controversies than to systematic data about the issues.

Race and ancestry in biomedical research: exploring the challenges.

Direct-to-consumer (DTC) genetic testing has attracted a great amount of attention from policy makers, the scientific community, professional groups, and the media. Although it is unclear what the public demand is for these services, there does appear to be public interest in personal genetic risk information. As a result, many commentators have raised a variety of social, ethical, and regulatory issues associated with this emerging industry, including privacy issues, ensuring that DTC companies provide accurate information about the risks and limitations of their services, the possible adverse impact of DTC genetic testing on healthcare systems, and concern about how individuals may interpret and react to genetic risk information.

Setting Global Standards for Stem Cell Research and Clinical Translation: The 2016 ISSCR Guidelines

The use of race in biomedical research has, for decades, been a source of social controversy. However, recent events, such as the adoption of racially targeted pharmaceuticals, have raised the profile of the race issue. In addition, we are entering an era in which genomic research is increasingly focused on the nature and extent of human genetic variation, often examined by population, which leads to heightened potential for misunderstandings or misuse of terms concerning genetic variation and race. Here, we draw together the perspectives of participants in a recent interdisciplinary workshop on ancestry and health in medicine in order to explore the use of race in research issue from the vantage point of a variety of disciplines. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action, including restrictions resulting from commercial or regulatory considerations, the difficulty in presenting precise terminology in the media, and drifting or ambiguous definitions of key terms.