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Progress in Whole Genome Sequencing (WGS) will soon allow a large number ofindividuals to have their genome fully sequenced. This lays the foundations toimprove modern healthcare, enabling a new era of personalized medicine wherediagnosis and treatment is tailored to the patient's genetic makeup. It alsoallows individuals motivated by personal curiosity to have access to theirgenetic information, and use it, e.g., to trace their ancestry. However, thevery same progress also amplifies a number of ethical and privacy concerns,that stem from the unprecedented sensitivity of genomic information and thatare not well studied. This paper presents an exploratory ethnographic study ofusers' perception of privacy and ethical issues with WGS, as well as theirattitude toward different WGS programs. We report on a series ofsemi-structured interviews, involving 16 participants, and analyze the resultsboth quantitatively and qualitatively. Our analysis shows that users exhibitcommon trust concerns and fear of discrimination, and demand to retain strictcontrol over their genetic information. Finally, we highlight the need forfurther research in the area and follow-up studies that build on our initialfindings.

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