‘Your DNA, Your Say’ is an ambitious, global research project in the form of a ‘film-survey’ experience gathering the views of people around the world on online health data and how it might be used by others, with the ultimate aim of feeding the results into global policy about genomics.
A series of short films introduces participants to the practical and ethical issues of DNA and medical data sharing, followed by a survey in which participants are asked to provide their views on whether they would donate their data, for what purpose, and whether they perceive any harms associated with the act of donating. So far, the online survey and films have been translated into 15 languages and attitudes have been gathered in 22 countries across the world (Argentina, Australia, Belgium, Brazil, Canada, China, Egypt, France, Germany, India, Italy, Japan, Mexico, Pakistan, Poland, Portugal, Russian Federation, Spain, Sweden, Switzerland, United Kingdom, and the United States of America).
Whilst the different language versions to date have relied on subtitles over the English spoken content, the cultural adaptation of these videos is currently undergoing a step change, with the creation of an African protagonist speaking in his own language, for the Ghanaian version of the survey, due to go out in 2021. The Ghanaian arm of the project is being led by PhD research student Jerome Atutornu, who is exploring the attitudes of black and minority ethnic groups (Ewe and Twi speaking Ghanaians, in this case) towards genomics and the willingness to donate DNA data.
Q: So what has changed between English Charlie, the boy who features in all the films, and the new Ghanaian Charlie?
Almost everything! Charlie is now an animated character, with skin colour and appearance that would be more familiar to Ghanaian audiences. He speaks both Twi and Ewe, two of the languages spoken in Ghana, (in two different film versions), and the accompanying music, although in the same up-beat style, now uses African instrumentation. One thing that he has kept, however, is his name. This is because Charlie in Ghana means ‘mate’ in the local Pidgin English, and Jerome felt it suited his character well.
We spoke with some of the ‘Your DNA, Your Say’ team about this re-imagined character and the importance of cultural adaptation to enable effective communication with different public audiences.
Q: Can you tell us a bit about Charlie’s background?
Anna Middleton, creator of Your DNA, Your Say survey concept: “Being able to deliver this study, in a culturally sensitive way, using lay language has been a significant but exciting challenge. It is vitally important that we reach as broad a spectrum of public audiences as possible and particularly target those who don’t often get an opportunity to have a voice about genomic research. Their views are often missing from policy and so we wanted to pay extra special attention to ensuring our research could be accessible to as many people as possible. Diversity and inclusion is absolutely paramount.
“Each film acts as a bridge to the audience, explaining, in a neutral-friendly manner, the background to the project. Genomics is often seen as ‘difficult’ and ‘hard to understand’, so we created the films as an antidote to this, using a child (Charlie) as the main character who uses his playroom as a metaphor for the internet, where genomic data (his boxes of toys) are shared. In the pilot work for the project, we discovered that public audiences found the non-threatening, child-like (not childish) approach was helpful for demystifying the topic and helping to balance the power differential often created by genomics (‘expert’ versus ’non-expert’). It was important to us that our public audiences felt able to engage in our research and embrace a subject unfamiliar to them.”
Q: Why is it so important to adapt the survey and films for – in this instance Ghanaian – audiences in a culturally sensitive way?
Jerome Atutornu: “In my earlier consultations with portions of the Ghanaian community in the UK and Ghana, it became clear that it would look odd for a young white child explaining these concepts to them. We therefore felt that it is important that the target audience are able to identify with the characters in the video clips, and a Ghanaian Charlie seemed culturally appropriate. These films will be shown to Ewe and Twi speakers in both Ghana and the UK and a comparison of attitudes will be gathered between the two countries.”
Q: Did you encounter any technical challenges in making the Twi version of the Charlie videos?
Lauren Robarts, Senior Manager: “The main hurdle we came across was to do with displaying the text on screen. As we found with some of the other languages (notably Farsi), the special characters of some languages only work with specific fonts, and sometimes those fonts do not work very well in Unicode (the type of font required for web pages). The font we had originally been using in the videos, which is suited for Twi and Ewe, was not displaying well online. After much research, we found some fonts – which had been created at the Summer Institute of Linguistics in Texas – that could display the special characters. We learnt that all their fonts are open access, so we are now hopeful our web team can get one of these to work on the survey website!
Q: Have you created a localised Charlies for anywhere else?
Anna: “Creating the Ghanaian Charlie is the first time we have translated the films into animation and this has shown it is easy to make cultural adaptations within animation. One of the reasons that the project hasn’t been successful yet in South Africa (where we do have collaborators to help us run it) is because the White Charlie in the film didn’t fit culturally. So, if our collaborators want to do this, we can now easily do an animated version in various South African languages. Now we have the template it will be very easy to culturally adapt it to any audience we like.”
The results of the Your DNA, Your Say survey in Ewe and Twi, and a comparison of attitudes to genomics between Ghana and UK, will form part of Jerome’s PhD thesis. It will also contribute to the body of work that is already feeding into global policy on public perceptions of genomics, online health data, and how it might be used by others.
Reference papers to date from the Your DNA, Your Say study:
- Middleton A, Milne R, et al (2020) Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data. European Journal of Human Genetics, vol. 28, issue 4, pp 424-434, April
- Torsten HV, Holtz V, Niemiec E, Howard HC, Middleton A, Prainsack B (2020). Willingness to donate genomic and other medical data: results from Germany. European Journal of Human Genetics. Published online ahead of print, 1st April. Available at: https://doi.org/10.1038/s41431-020-0611-2
- Milne R, Morley KI, Howard H… Atutornu J, Farley L, Middleton A, et al (2019) Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. Human Genetics, vol. 138, issue 11-12, pp 1237-1246, December
- Middleton A, Milne R, et al (2019) Attitudes of publics who are unwilling to donate DNA data for research. European Journal of Medical Genetics, vol. 62, issue 5, pp 316–323, May
Lawler M, Morris A, Sullivan R… Middleton A, et al (2018) A roadmap for restoring trust in Big Data. The Lancet Oncology, vol. 19, issue 8, pp 1014-1015, August
- Middleton A, Niemiec E, Prainsack B… Farley L, Morley KI, et al (2018) ‘Your DNA, Your Say’: global survey gathering attitudes toward genomics: design, delivery and methods. Personalized Medicine, vol. 15, issue 4, pp 311-318, July
- Middleton A (2018) Society and personal genome data. Human Molecular Genetics, vol. 27, issue R1, pp R8–R13, March
- Thorogood A, Bobe J, Prainsack B… Middleton A et al on behalf of the Participant Values Task Team of the Global Alliance for Genomics and Health (2018) APPLaUD: access for patients and participants to individual level uninterpreted genomic data. Human Genomics, vol.12, article 7, February
- Middleton A (2017). Data Sharing and Participation: Your DNA, Your Say. The New Bioethics, vol. 23, issue 1, pp 74-80