NHGRI reports on first genomic literacy workshop

Group photo of genomic literacy workshop participants

Preparing the public for a future in which the use of genetic and genomic information will become a routine part of medical care was the focus of a genomic literacy workshop organized by the National Human Genome Research Institute (NHGRI) in the fall of 2011. Fifty participants from  state and federal governments, kindergarten to grade 12 educators, and advocacy groups gathered on Nov. 17-18, 2011, in Rockville, Md. to make recommendations on the scope and priorities for a genomic literacy research agenda. Now, a meeting report describing the results of that workshop has been published online in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics.
 
"We know that the public's ability to integrate genomics into their personal health care lags behind the explosive scientific achievements in the field," said Belen Hurle, Ph.D., public health educator in NHGRI's Education and Community Involvement Branch. "But, at the same time, what constitutes a genomically literate public remains to be fully articulated."
 
To explore this topic, participants examined challenges facing educating the public from both the K-12 and adult perspectives. They also discussed the gaps and areas of opportunity for studying genomic literacy in both the short and long term, and the role of the media in disseminating scientific messages.
 
"The public encompasses many different communities, and the interface with genetics and genomics changes in each life cycle stage," said Dr. Hurle. "That is why involving diverse communities in decision-making and ensuring all voices are heard is essential to achieving a long-term, genomic literacy goal."
 

The group made overarching research recommendations to jumpstart genomic literacy across all communities, including:
  • Supporting research to define what the public needs to know.
  • Conducting research on best education practices for the public.
  • Generating short-term and long-term national genomic literacy assessment tools.
  • Establishing and inviting the public to participate in a national conference on genomics education.

Participants also recommended more research on the use of family health history as a clinical tool.  Family health history remains the most effective, least expensive tool available to the public to assess personal disease risk.
 
"The meeting was very exciting, especially because of its trans-disciplinary nature," said Dr. Hurle.  "Professionals and lay communities came together to share their experiences and expertise on the challenges and the opportunities ahead."
 
To read the meeting report and recommendations in the Genetics in Medicine paper, go to: What does it mean to be genomically literate?: National Human Genome Research Institute Meeting Report [nature.com]
 

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Posted: April 5, 2013