Bridging the trust gap between the bedside and the bench
The esoteric nature of genomic medicine, coupled with the public’s general lack of science literacy, can lead to a trust gap between patients at the bedside and the very science that could help them from the laboratory bench. TGen’s Center for Rare Childhood Disorders uses genomic medicine, specifically whole exome sequencing, to help identify the cause and aid in the treatment of young patients’ rare diseases. How do patients and their families know that they can trust genomic medicine to give them the answers they have been seeking?
I produced educational videos to serve as a metaphorical bridge across the trust gap. The videos include interviews and animations to illustrate how TGen processes a blood sample through to a diagnosis. I measured the effectiveness of these videos by obtaining anonymous SurveyMonkey responses from supporters of the Center, patients and families from United Cerebral Palsy, TGen Ambassadors, and users of numerous social media platforms. Before watching the video, nearly half of the responders, about 40%, reported that they knew nothing about whole exome sequencing. After watching the video, only 1.30% stated they did not understand the concept and more than 43% said they could explain it in their own words.
I designed this video series to instill knowledge of and an appreciation for whole exome sequencing so that TGen’s relationship with families at the Center for Rare Childhood Disorders grows even stronger.