Genetic health information: Trust it or trash it? A tool for creating and evaluating genetics educational material

With informed decision-making being an important component of health care, the ability to understand and trust the accuracy of information is critical. While health professionals should have been trained to read and assess medical literature with a critical eye, most of the public may not have the same training or familiarity with the literature. Even for health professionals, assessing information about genetic components of disease presents significant challenges. In addition, new technologies and widespread access to the internet have increased opportunities for individuals and organizations to create and share educational materials. These new “publishers” could benefit from guidance to create accessible materials with quality information.

Review of the literature on the evidentiary basis for medical information reveals a significant gap in standards for evaluating health information. Existing criteria for evidence-based medicine provide standards of clinical care or treatment, but do not address the way such standards are applicable in the context of providing health information.

To address this gap in the context of genetic conditions, where the evidence base for clinical care presents challenges due to the rarity of conditions and available data, the Access To Credible Genetics Resources Network (ATCG-RN) created an online toolbox (www.trustortrash.com) that includes guidelines for content, quality, and usability of the information and can be used by both creators and consumers of educational materials. ATCG-RN also convened a meeting to further the discussion of providing complex, evolving information to a variety of audiences. The toolbox and the findings from the meeting are presented here.