Your DNA, Your Say (YDYS) is an international, online survey that reflects the intersection of two current-day hot button issues: DNA sequencing and Big Data. When the survey was being developed in early 2016, social scientist Anna Middleton, bioethicist Heidi C Howard, and then-PhD student Emilia Niemiec knew that a hindrance to seeking public attitudes on the storage of genomic and medical data in online databases was that the general public was generally unfamiliar with the term ‘genomics’ at the time. And if they wanted the survey to be truly global, it couldn’t only be in English.
And so YDYS was developed as a film-survey experience, which was then translated and culturally adapted. Snappy, short videos, heavy on storytelling and minimal in their use of overly-technical language, provide respondents with enough background information in order to complete the survey.
Tim Pope, as well as the filmmaker, is a member of the target audience: the general (i.e. non-science literate) public. In a creative development meeting he said “You have to explain genomics to me as if I were a six year old.” Thus emerged the concept of a young boy acting out the role of a medical doctor, an academic researcher, and a pharmaceutical researcher, each accessing people’s DNA and medical data (represented by puzzle pieces) from a database (his playroom bookcase). In the films the young doctor/researcher is played by Anna’s son, Charlie!
Given the fundamental role of video in the YDYS survey experience, it seemed only appropriate to create a short talking-head film to complement an academic paper we published recently in Personalized Medicine (vol 15, no. 4): ‘Your DNA, Your Say’: global survey gathering attitudes toward genomics: design, delivery and methods.
The film interviews of the three co-creators of the survey, sharing their thoughts on the whys and the hows of the survey build as well as the complexities and nuances of translating the survey. YDYS is currently available in ten languages – Arabic, English, French, German, Icelandic, Italian, Polish, Portuguese, Russian, and Spanish – with more launching soon.