Excerpt from article:
“Trust is so important in gathering data,” explained Anna Middleton, Head of Social Science and Ethics at the Wellcome Genome Campus. “If we want to see scientific and medical breakthroughs, we’re going to need people to trust us—their doctors, researchers, governments—enough to share their very personal information with us.”
Middleton led the team in developing Your DNA, Your Say, an online survey to gauge global public attitudes towards genomic data sharing and identify factors that encourage or discourage sharing. The survey and accompanying videos have been translated into 14 languages and distributed among publics across the globe. To date, the team has received responses from 35,000 individuals worldwide, including representative public audiences from 22 countries.
Global Alliance for Genomics and Health (2019). Your DNA, Your Say Publishes Study on Trust in English-Speaking Populations. GA4GH Blog [Online]. Available at: https://www.ga4gh.org/news/your-dna-your-say-publishes-study-...&utm_med... October 2019]