Biological Citizen Publics: Personal Genetics as a Site of Scientific Literacy and Action
Stacey Kuznetsov, Aniket Kittur, and Eric Paulos
Low-cost genetic sequencing, coupled with novel social media platforms and visualization techniques, present a new frontier for scientific participation, whereby people can learn, share, and act on data embedded within their own bodies. Our study of 23andMe, a popular genetic testing service, reveals how users make sense of and contextualize their genetic results, critique and evaluate the underlying research, and reflect on the broader implications of genetic testing. We frame user groups as citizen science publicsgroups that coalesce around scientific issues and work towards resolving shared concerns. Our findings show that personal genetics serves as a site for public engagement with science, whereby communities of biological citizens creatively interpret, debate, and act on professional research. We conclude with design trajectories at the intersection of genetics and creativity support tools: platforms for aggregating hybrid knowledge; tools for creative reflection on professional science; and strategies for supporting collaborations across communities.