HelixGene Foundation to Ensure Responsible Reporting of Genomic Medicine

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Traditional media (i.e. television, print) are the principal sources of science information for the public. This is changing however; adult home broadband users under the age of 30 report that the internet is the most popular source for science news and information [1]. Unfortunately, while the public is consuming science reporting today more than ever before, the media is doing a poorer job covering the field. This is particularly troublesome for genomic medicine and personal genetics, since many physicians who lack training in genomics and genetics frequently get their information from the same mainstream media sources as the public.

Genomic medicine is the use of information from the genome to guide the development of new therapeutics and directly influence patient care.

Personal genetics is the use of a person’s genetic makeup to predict health risks and provide ancestry information.

Moving knowledge from the world of scientists into the public arena, where there are limitations on both space and reader interest, can be a challenging task. Reporting on medical genomics and personal genetics requires a translation in both language and phrasing. A 2004 study addressed popular media’s coverage of genomics, tracing reports from their original source in a scientific journal through to media publication [2]. The researchers found a significant difference in content between the original research paper and the news report, demonstrating the failure of mainstream media to accurately translate and report genomics for the public. However, until today, no standards existed to hold journalists accountable for accurate reporting of genomic medicine.

The HelixGene Foundation for Genomics was created to address the issue of reporting accuracy in medical genomics. Developed in response to significant misinformation published in a recent New York Times article discussing Google co-founder Sergey Brin and risk of Parkinson Disease, the Foundation organizes the distributed efforts of academics. The HelixGene Foundation grades publications to hold the media accountable for honest and accurate reporting of medical genomics, acting as a liaison between researchers, doctors and journalists. Additionally, the HelixGene Foundation will publish press releases about mutations to help journalists better report medical genomics and produce media about medical genomics to educate others.

Genomic medicine is believed to be the future of healthcare. Indeed, it is poised to improve disease diagnosis, therapy and prevention. All physicians will soon need to have a fundamental grasp of genomic medicine; to understand the concept of genetic variability, its interactions with the environment and its implications for patient care [3]. For both public and physician education, medical genomics and personal genetics must be accurately reported by media. The HelixGene Foundation for Better Genomic Medicine will review media reports on genomic medicine, in essence providing a peer review for accuracy and honesty.

Additional information on Genetics and Genomics for patients and the public, as well as health professionals, can be found at the National Human Genome Research Institute website. A publicly accessible New England Journal of Medicine article from 2002, Genomic Medicine — A Primer, is also recommended [3].

Additional resources on genome-based medicine or personalized medicine can be found in the Personalized Medicine category of the Highlight HEALTH Web Directory.

The media isn’t doing its job educating the public about genomic medicine and personalized genetics. The HelixGene Foundation will thus provide a valuable resource to verify media reports and hold journalists accountable for the accurate reporting of genomic medicine.