Users' Attitudes, Perception, and Concerns in the Era of Whole Genome Sequencing

Advances in Whole Genome Sequencing (WGS) will soon allow a large number of individuals worldwide to have access to their sequenced genome, yielding momentous medical and societal consequences. However, this process also comes with the risk of amplifying a number of ethical and privacy concerns, that have been analyzed both by the research and the policy communities. In this paper, we turn to non-expert users and begin to assess their perception of privacy and ethical issues with WGS, their attitude toward different WGS programs, as well as their general perception of genetic tests. We report on a series of semi-structured interviews, involving 16 participants, and analyze the results both quantitatively and qualitatively. Our preliminary studies yield some interesting findings and highlight the need for more ethnographic studies in the field.