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Article Excerpt
In 2004, the International Human Genome Sequencing Consortium published its scientific description of the finished human genome sequence containing 20,000 to 25,000 protein-coding genes. (1) The Human Genome Project (HGP), through political rhetoric and publicity, was portrayed as an end in itself, which, in the near term, would produce an explosion of new genomics products, services and therapeutics. Most have yet to materialize and some of those that have, especially in the area of genetic testing targeted directly at consumers, raise considerable ethical, regulatory and legitimacy issues. In particular, the field of nutrigenomics illustrates many of these concerns in the context of direct-to-consumer (DTC) advertising and delivery of genetic testing services, related products (such as nutritional supplements) and associated media coverage.
This article presents preliminary data from a study of how the media translate knowledge about nutrigenomics to the public. Specifically, we are interested in whether media coverage of nutrigenomics is of sufficient quality for the public to understand the risks and benefits associated with genetic testing. We have considered three main sources of information: peer-reviewed science journals, media coverage and, more briefly, promotional material from nutrigenomic company websites. A fuller understanding of the media's role has policy implications as countries deal with regulating the provision of genetic testing services and the sale of nutritional supplements and personalized diet plans. It also has implications for regulating commercial representations of nutrigenomics, especially DTC advertising by genetic testing companies and the claims they can make about health benefits.
Nutrigenomics is the study of how dietary components interact with genes and gene products to alter phenotype and, inversely, how genes and gene products metabolize dietary intake. (2) Nutrigenomics offers the promise of genetic testing to integrate genomic information in preventive medicine and public health, (3) as well as diet and lifestyle regimes tailored to an individual's genetic makeup. The hope is that people will take the opportunity to modify their lifestyles and environment to reduce risk if they learn about genetic risk factors for a range of diseases, such as cancer, heart disease, or Alzheimer's. (4) Ethical, legal and social issues in nutrigenomics are only beginning to be addressed. (5)
Key Actors and Forces in Genomics Knowledge Translation
The hype surrounding genomics has been promulgated by a complex set of actors, each with something to gain, who have become complicit collaborators (6) in a "cycle of hype". (7) The cycle, as conceived by Caulfield, is around three main actors: scientists, the media and the public. (8) Scientists are driven partly by enthusiasm for their research and personal advancement in a highly competitive academic environment, but also by external pressures from the institutional public relations machinery, university career evaluation processes heavily geared towards research output and funding, public funding agencies, and, increasingly, industry funders. The media are driven by their own commercial agendas, and, in the context of genomics research, this predominantly means acting as an uncritical cheer squad for genomics research. (9) The public are excited by the prospect of cures for devastating and common diseases, such as cancer and heart disease, and are caught up in the rhetoric of progress.
In the context of nutrigenomics, commercial interests also contribute to the cycle of hype, not merely as indirect influences on scientists and media, but as independent actors. (10) Most news coverage of nutrigenomics stems from coverage of products and services delivered by nutrigenomics companies. The main spokespersons are scientists tied directly to nutrigenomics companies. Through the scramble to secure adequate venture capital and customers, commercial interests in the genomics sector contribute directly to the over-representation of genetic contributions to natural human variation (11) and multi-factorial disease processes. To attract customers, companies engage in DTC advertising of products, such as susceptibility testing, paternity testing, or testing to determine ancestral or ethnic origin for genealogy studies.
The increasingly commercial focus of much genomics research is fueled by the U.S. government's commitment to transfer technology derived from the HGP to the private sector. (12) By licensing technologies to private companies and awarding grants for innovative research, the project catalyzed the multibillion-dollar U.S. health biotechnology industry and continues to foster the development...
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