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Genetics and Privacy: A Patchwork of Protections

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The science of genomics has great promise. Ideally, the more scientists learn about the human genome and its specific genes, the better scientists will understand what causes certain diseases and what can prevent and cure them. Most genetics breakthroughs to date, however, have involved rare single gene disorders. Discoveries involving more common and complex diseases are rare. Furthermore, there is a very long road between the discovery of a particular genetic abnormality and the development of a clinical application to correct it, if any is developed at all. Amidst this uncertainty, one thing is sure: Genetic-related advances in medicine will not occur if individuals are afraid to provide their genetic information to scientists for research purposes. Recent surveys indicate that many people are concerned about how their genetic information will be used. This purpose of this report is to explain the state of the science as it actually is and define some genetic-related common terms; to discuss how the privacy of genetic information is and is not protected (focusing on health care providers, researchers, health plans, and employers); to examine one of the new frontiers in health care--the Internet--and the phenomenon of people entrusting their most sensitive information, including their genetic information, to a largely unregulated cyberspace; and, lastly, to identify the large gaps in national policy that leave genetic information exposed to misuse.