Voices of GA4GH members: Collaborating in technology and policy development
10th November 2021
The Global Alliance for Genomics and Health (GA4GH) is organized around eight Work Streams, where members develop technology standards and policy frameworks to enable the responsible sharing of human genomic and health-related data. These are implemented across 24 Driver Projects, reflecting real-world genomics initiatives. In this Voices, Cell Genomics asked GA4GH members to reflect on their engagement with GA4GH and how this has driven progress in open science and genomic medicine.
“Behind every genomic data point is a person who has thoughts and feelings about the way their data are used—this was the driving force behind suggesting that we set up the Your DNA, Your Say study. This project aimed to collate views from public audiences around the world so that the work of GA4GH could incorporate public attitudes, values, and beliefs into policy. After an invitation through the Regulatory and Ethics Work Stream , we started with a small group of social scientists and genetic counsellors all connected to GA4GH work, and the project has since expanded beyond and out of GA4GH and now has a collection of collaborators from 23 countries around the world. It has been so inspirational to lead a group of researchers, all very passionate about working directly with public audiences and all spearheading a sense of justice that an organization as large as GA4GH must have a public voice in its work. Together, we wrangled with really interesting questions, e.g., how to translate “DNA data” into languages that do not currently have these words, e.g., Twi and Ewe (two Ghanaian languages), and how to explain the complexities of genomic data sharing using metaphor and film. We now have 17 different languages of the survey and have collected 37,000 completed responses from representative public audiences across the globe and have shown that public audiences are very unfamiliar with the concepts of DNA, genetics, and genomics, and trust in the sharing of genomic data beyond our own doctor is very low. All of us within the Your DNA, Your Say project feel strongly that the aim of genomics is to serve society, and for this to be true, genuine partnership with society has to exist. This research shows that so much more needs to be done to bring public audiences on the journey to deliver the benefits of genomics, and as a social scientist and genetic counsellor myself, I’m always keen to connect with scientists and policy makers around the world who want to hear what public audiences think about the implications and application of genomic technology.”
Anna Middleton, MSc, PhD
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Citation:
Available at https://doi.org/10.1016/j.xgen.2021.100036