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

The goal of this paper is to explore what online education and decision support tools are freely available to patients about prenatal screening.

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.

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.

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.