Informal Prenatal Genetic Screening Education: What can you learn from Google and YouTube?

Introduction: The goal of this paper is to explore what online education and decision support tools are freely available to patients about prenatal screening. Materials and Methods: We 1) conducted an environmental scan using Google Trends to identify and evaluate prenatal screening search terms, 2) created a list of websites and YouTube videos that would be easily accessed by a searcher and 3) characterized the information within those websites and videos, including an examination of their qualities as a decision support tool and a readability analysis. Results: Fifty websites, containing 62 unique educational resources, and 39 YouTube videos were analyzed. The websites were primarily educational, though the education was provided by a range of sources including non-profit and for-profit organizations, universities, and governments (i.e., public health departments). Readability scores (PEMAT-P) for the sites ranged from 50% to 92%, with a median score of 74%. Two of the websites we evaluated met all of the limited decision support standards we applied; four of the websites included patient stories or experiences and eight included some element of values clarification. Videos were more likely to include values clarification. Discussion: The information available to patients online is variable. While most is balanced and informative, much is difficult to read and missing key decision-making factors. Healthcare providers should work with patients to ensure they have basic comprehension of the prenatal genetic screening materials, possible result outcomes, and expected steps following a positive screening result.