Genetic Testing vs. Individual Privacy

TitleGenetic Testing vs. Individual Privacy
Publication TypeCase Study
Year of Publication2008
AuthorsLoyd, TS, Pottorff, S, Edmondson, C, Frantz, R
Corporate AuthorsIowa Sta te University,
Pagination10 p.
Date Published06/2008
PublisherIowa State University
Publication LanguageEnglish
KeywordsConfidentiality , GENETICS , MEDICINE , Privacy and Surveillance
AbstractThis case study, involves a look at the debilitating Huntingdon's disease. This affliction envelops its victim by riddling them with involuntary movements, impaired speech and dementia. This is the case of a 22 year old male - 'Nathan' - who grew up watching his mother 'Eva', deteriorate into a helpless individual after the onset of Huntingdon's disease. Nathan did not seek a genetic test to establish whether he had the specific gene causing Huntingdon's disease, however, he was aware that because his mother had the condition, there was a possibility that he could have inherited the gene - although there was no certainty. Nathan applied for a job in the public sector: "After matriculating from college with above-average marks, Nathan applied for acceptance into his long-chosen career in the public sector and was placed in the top 5% of applicants. The final entry requirement was to pass the medical examination. In response to the requirements of the medical examination, Nathan submitted that there was a history of Huntingdon's disease in the family. The fact that Nathan was bright and a high-achiever did not appear to be enough. The department concerned informed Nathan that the job was his on the condition that he submitted to a genetic test and that it subsequently proved negative for the genotype that causes Huntingdon's disease. Nathan did not undergo the test, but began an appeal process through the Department - eventually being employed after a lengthy process, but on the proviso of a number of conditions being met. He gladly accepted. The case of Nathan shows that genetic discrimination does not merely require actual genetic conditions to be present, but perceived conditions can be the basis of discriminatory treatment as well.You are a member of an interest group supporting Nathan, and are representing his interests at a Presidential advisory committee focusing on legislation that bans the discrimination of individuals based on genetic information. Does this law need to be changed?
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