May 2009

Document Type


Degree Name



Dept. of Medical Informatics and Clinical Epidemiology


Oregon Health & Science University


Scientific and technological developments have made it possible to test human DNA for the presence of abnormalities associated with some inherited disorders. This genetic information may become part of an individual’s medical record, creating the potential for discrimination in employment, insurance purchase, and other areas. The Genetic Information Nondiscrimination Act and Health Insurance Portability and Accountability Act have provisions intended to protect individuals from genetic discrimination, but health care industry and societal influences threaten individuals’ genetic privacy. At the same time, health care reform and the movement to identify the most effective medical treatments have resulted in increased interest in secondary use of individuals’ medical information, including genetic information. Through a literature review, this paper examines how data privacy, data security, and electronic health records have influenced the current understanding of genetic privacy. It explores evolving forces - social media, patient-driven research, personal health records, online marketing of genetic tests, and data ownership and stewardship issues - that are changing the way patients interact with the health care system. After assessing consumers’ expectations and the impact of legislation on genetic privacy, this paper identifies systems- and process-based approaches to genetic data management and secondary use of genetic data.




School of Medicine



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