text: Progress in Whole Genome Sequencing (WGS) will soon allow a large number of individuals to have their genome fully sequenced. This lays the foundations to improve modern healthcare, enabling a new era of personalized medicine where diagnosis and treatment is tailored to the patient's genetic makeup. It also allows individuals motivated by personal curiosity to have access to their genetic information, and use it, e.g., to trace their ancestry. However, the very same progress also amplifies a number of ethical and privacy concerns, that stem from the unprecedented sensitivity of genomic information and that are not well studied. 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.
  @cite_39: It is commonly believed that the use of an individual patient's genetic information should be held to a slightly different legal standard than the use of general medical information. This article in the Genomic Medicine series provides examples of appropriate and inappropriate uses of genetic information. For physicians, the biggest dilemma is whether to inform the relatives of patients who have received a diagnosis of a heritable condition for which there is treatment and who are reluctant to share this information with their families.
summary: Also, prior work analyzed the issue of labor discrimination in relationship to disease predisposition, mostly from the legal standpoint. We refer to the work by @cite_39 for details, along with a review of well-known rulings.