Sunday, April 20, 2014

The Critical Challenge of Educating the Public About Genetics

Abstract (full paper here):

The translation of genomics into medicine would benefit from a public that has a strong foundation in core genetics principles and that is able to access, identify, and use reliable information. Unfortunately, public under- standing of genetics is generally poor, a condition that can be traced to deficiencies in formal science education, weaknesses in representations of genetics in the media and on the Internet, and the limited knowledge and involve- ment of health care providers in patient education. Not- withstanding these challenges, the Internet, media, and health professionals likely will remain major sources of public education. Whether those sources contribute positively or negatively will depend, in part, on the public’s ability to discriminate high-quality from low-quality information and on health providers’ understanding of genetics and their willingness to engage in the genetics education of their patients.


The improvement of public genetic literacy is an educational challenge that necessarily must address several levels of education and communication. Modernizing genetics education in public K-12 schools is an essential goal, but one challenged by a long time horizon, the complications (in the US) of local control over curriculum, and the baleful impact of uneven teacher quality. These significant barriers emphasize the importance of alternatives to formal K-12 education that may be more effective at promoting the integration of genomics into health care, especially in the near term. The media represent one such alternative, but present their own challenges, including representations of genetics such as genetic optimism and oversimplification of complex topics, which are due to a variety of issues stem- ming from both journalistic practices and failures in science communication. In communicating with the media, geneticists and their institutions must strive to clearly and accurately communicate complex information and resist the temptation to promise too much of genetics. Providing journalists with the names of third-party experts and encouraging media training for lead authors may reduce the inaccuracies conveyed to journalists and improve the     balance and context of media coverage of genetics. The Internet is an almost ubiquitous tool for informing the public, and many sites provide reliable information about basic genetics, genetic tests, and applications of genomics to medicine. Such sites, however, are widely dispersed, and much of the public lacks the skill to discriminate effectively between sound and unsound information.

Information about genetics has never been more accessible, but much of it is oversimplified, overhyped, and misunderstood. Health care providers can help patients make sense of this confusion by presenting genetic information in a clinical context that is relevant to their patients. That clinical skill, however, will require that providers are willing to engage their patients in an early and open dialogue about genetics and that the providers themselves are confident in their own understanding of the field. Success does not require that providers be encyclopedic in their knowledge. Rather, by serving as arbiters of information quality, translators of complexity, and advocates for their patients, health care providers can assist their patients in educating themselves.

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