Biological Citizen Publics

Abstract

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.

Direct‐to‐consumer genetic tests providing health risk information: A systematic review of consequences for consumers and health services

“…Country of study, study method, and the number of papers addressing each review question are presented in Table 1. Twenty‐five studies used quantitative methods, 18–42 seven qualitative methods, 43–49 and three mixed methods 50–52 . There were eight case studies, 53–60 reporting on 12 individual cases.…”

“…There were eight case studies, 53–60 reporting on 12 individual cases. The majority of studies (72.1%) were conducted in the United States, 18,20–33,35–38,40–42,46–48,50,52,55,56,58,60 others were from Australia (11.6%), 34,39,49,51,57 Europe (4.7%), 44,45 and a single paper each from Canada, 59 France, 54 Italy, 19 Spain 53 and the United Kingdom 43 . Eighteen papers presented data from one of three larger studies: Impact of Personal Genomics (PGen) used longitudinal surveys with a cohort of 1648 consumers who had purchased 23andme (SNP array) or Pathway Genomics (undisclosed product); Scripps Genomic Health Initiative (SGHI) studied 2037 consumers who purchased “Health Compass”, a subsidised DTC‐GT produced by Navigenics, which provided genetic risk information for common diseases and offered in‐house genetic counselling; and Genomics: National Insights of Australians (Genioz) explored the views and experiences of the Australian public regarding DTC‐GT and includes surveys and consumer interviews.…”

Exploring Genetic Data Across Individuals: Design and Evaluation of a Novel Comparative Report Tool

“…However, to date, HCI research on interaction with personal genomic data is in its infancy. Studies that investigated the information practices of personal genomic data users found that nonexperts seek to contextualize and compare their personal data with others (eg, family members and others with similar medical conditions) [2,3]. The family-relevant nature of genetic data highlights the need for tools to enable nonexperts to explore not only their own data but also to compare and contrast it with the data of others.…”

“…Such comparisons enable users to explore what variants they share with others and what sets them apart, thus increasing the understanding of their genetic makeup and enriching the genomic narrative people can construct. There has been a growing interest in exploring how people form social ties around health conditions caused or influenced by genetic characteristics—what Kuznetsov et al have called biosociality [2]. In this paper, we discuss findings from 2 user studies focusing on assessing the usability and understandability of comparing genetic reports of family members using alternative prototypes of CrossGenomics.…”

“…Kuznetsov et al [2] presented users with their own 23andMe data to understand how they make sense of and contextualize their results. Shaer et al [3] studied how nonexperts who participate in the Personal Genome Project explore their own data.…”