An Exploratory Ethnographic Study of Issues and Concerns with Whole Genome Sequencing

Progress in Whole Genome Sequencing (WGS) will soon allow a large number of individuals to have access to their fully sequenced genome. This represents a historical breakthrough, enabling momentous medical and societal advances. However, the very same progress also amplifies a number of ethical and privacy concerns stemming from the unprecedented sensitivity of genomic information. This paper presents an exploratory ethnographic study of users' perception of privacy and ethical issues with WGS, as well as their attitude toward different WGS programs. We report on a series of semi-structured interviews, involving 16 participants, and analyze the results both quantitatively and qualitatively. Our analysis shows that users exhibit common trust concerns and fear of discrimination, and demand to retain strict control over their genetic information. Finally, we highlight the need for further research in the area and follow-up studies that build on our initial findings.