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ELSI Panel Considers Public Understanding of Genomics at Biology of Genomes Meeting

COLD SPRING HARBOR, NY (GenomeWeb News) – There are several potential avenues available for genomics researchers interested in informing the public about genomics research and its potential applications, Biology of Genomes annual meeting attendees heard yesterday during an Ethical, Legal, and Social Implications panel discussion.

During the session, chaired by Vence Bonham, chief of the National Human Genome Research Institute's education and community involvement branch, experts discussed everything from appropriate measures of scientific and genetic understanding among the public to ways of assessing and improving accurate perceptions of the work.

Participating in the session were Jon Miller, director of the University of Michigan's International Center for the Advancement of Scientific Literacy, Washington University Institute for Public Health researcher Kimberly Kaphingst, and University of California at Los Angeles clinical geneticist and pathologist Wayne Grody.

Miller described work that has been done to gauge civic scientific literacy, a measure of individuals' understanding of the basic scientific constructs that are expected to help people to continue to grasp scientific advances in the future.

While surveys over the past 30 years or so suggest that this civic scientific literacy is improving — and even relatively high in the US compared to other countries, Miller said the overall levels remain low. In recent years, for example, just 30 percent or so of Americans surveyed were classified as scientifically literate using the CSL index. Biological literacy was even lower at around 20 percent.

Moreover, Miller added, individuals who seek out science-related learning resources tend to be those who have already taken science courses at the college level — one of the current determinants of science literacy.

Based on such research, Miller argued that the researchers can contribute to the public's understanding of science by speaking with journalists, science-friendly or neutral special interest groups, scientists from other disciplines, and representatives in elected office.

Kaphingst presented research that took a different tack in looking at genomic literacy, specifically surveying individuals who were already participating in genetics and genomics studies.

This genomic literacy falls into four categories, explained Kaphingst, who has collaborated on genomics projects such as NHGRI's ClinSeq and a Multiplex Initiative study looking at individuals' reactions to direct-to-consumer genetic susceptibility testing.

Although much of Kaphingst's own work is focused on individuals' conceptual understanding of genetics and genomics, she noted during the ELSI session that oral literacy, print literacy, and numeracy skills are also important considerations when thinking about public perceptions of this research and related medical applications.

Providing examples from her group's own genomics communication studies, Kaphingst discussed some of the factors that seem to influence study participants' understanding of relevant risk and concepts in a genetic research setting.

As she and her colleagues in Genetics in Medicine last year, for example, Multiplex Initiative participants who were surveyed were quite good at recalling their own genetic test results three months after receiving them. That study involved testing at 15 variants that appear to somewhat increase the risk for complex diseases such as heart disease, some cancers, and diabetes.

In addition, most who responded to the survey understood that testing positive for one or more risk alleles did not guarantee that they would get the disease and recognized that other behaviors influenced their disease risk.

Even so, Kaphingst explained, more research needs to be done to try to find ways of improving genetic knowledge in the broader public, including members of underserved groups who might be less prone to participating in genetic studies.

Meanwhile, Grody, who is the current president of the American College of Genetics and Genomics, spoke about his experiences acting as an advisor for various movies and television programs with genetic content.

Because television and film appeal to mass audiences, he noted, they offer an opportunity to either educate the public or to perpetuate misinformation. Consequently, Grody encouraged researchers to consider sharing their time with projects that are striving for scientific accuracy.

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