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_43: 
  @cite_53: In a study of the perceptions of 332 members of genetic support groups with one or more of 101 different genetic disorders in the family, it was found that as a result of a genetic disorder 25 percent of the respondents or affected family members believed they were refused life insurance, 22 percent believed they were refused health insurance, and 13 percent believed they were denied or let go from a job. Fear of genetic discrimination resulted in 9 percent of respondents or family members refusing to be tested for genetic conditions, 18 percent not revealing genetic information to insurers, and 17 percent not revealing information to employers. The level of perceived discrimination points to the need for more information to determine the extent and scope of the problem.
  @cite_34: Purpose: The impact of laws restricting health insurers' use of genetic information has been assessed from two main vantage points: (1) whether they reduce the extent of genetic discrimination and (2) whether they reduce the fear of discrimination and the resulting deterrence to undergo genetic testing. A previous report from this study concluded that there are almost no well-documented cases of health insurers either asking for or using presymptomatic genetic test results in their underwriting decisions, either before or after these laws, or in states with or without these laws. This report evaluates the perceptions and the resulting behavior by patients and clinicians. Methods: A comparative case study analysis was performed in seven states with different laws respecting health insurers' use of genetic information (no law, new prohibition, mature prohibition). Semistructured interviews were conducted in person with five patient advocates and with 30 experienced genetic counselors or medical geneticists, most of whom deal with adult-onset disorders. Also, multiple informed consent forms and patient information brochures were collected and analyzed using qualitative methods. Results: Patients' and clinicians' fear of genetic discrimination greatly exceeds reality, at least for health insurance. It is uncertain how much this fear actually deters genetic testing. The greatest deterrence is to those who do not want to submit the costs of testing for reimbursement and who cannot afford to pay for testing. There appears to be little deterrence for tests that are more easily affordable or when the need for the information is much greater. Fear of discrimination plays virtually no role in testing decisions in pediatric or prenatal situations, but is significant for adult-onset genetic conditions. Conclusion: Existing laws have not greatly reduced the fear of discrimination. This may be due, in part, to clinicians' lack of confidence that these laws can prevent discrimination until there are test cases of actual enforcement. Ironically, there may be so little actual discrimination that it may not be possible to initiate good test cases.
summary: @cite_53 were among the first, in 1996, to analyze consumers' perspectives as to genetic discrimination and reported that people cited fear of losing insurance as a major reason to avoid genetic testing. However, discrimination by insurance companies was not a widespread reality in the 90s, as few of these cases had been filed and even fewer had been won @cite_34 . Many states have passed laws to protect medical (and also genetic) information, such as the Health Insurance Portability and Accountability Act (HIPAA), which provides a general framework for sharing and protecting Protected Health Information. In the U.S., there also exists legislation specific against genetic discrimination -- the Genetic Information Nondiscrimination Act (GINA) -- which prohibits discrimination on the basis of genetic information with respect to health insurance and employment @cite_43 . However, neither GINA or HIPAA placed any limits on health insurance rate setting.