Genetic Privacy

Human genomic information is invested with enormous power in a scientifically motivated society. Genomic information has the capacity to produce a great deal of good for society. It can help identify and understand the etiology and pathophysiology of disease. In so doing, medicine and science can expand the ability to prevent and ameliorate human malady through genetic testing, treatment, and reproductive counseling. Genomic information can just as powerfully serve less beneficent ends. Information can be used to discover deeply personal attributes of an individual\u27s life. That information can be used to invade a person\u27s private sphere, to alter a person\u27s sense of self- and family identity, and to affect adversely opportunities in education, employment, and insurance. Genomic information can also affect families and ethnic groups that share genetic similarities. It is sometimes assumed that significant levels of privacy can coexist with widespread collection of genomic information. Understandably, we want to advance all valid interests--both collective and individual. We want to believe that we can continue to acquire and use voluminous data from the human genome while also protecting individual, family, and group privacy. This article demonstrates that no such easy resolution of the conflict between the need for genomic information and the need for privacy exists. Because absolute privacy cannot realistically be achieved while collecting genetic data, we confront a hard choice: Should we sharply limit the systematic collection of genomic information to achieve reasonable levels of privacy? Or, is the value of genomic information so important to the achievement of societal aspirations for health that the law ought not promise absolute or even significant levels of privacy, but rather that data be collected and used in orderly and just ways, consistent with the values of individuals and communities? The author argues that the law at present neither adequately protects privacy nor ensures fair information practices. Moreover, the substantial variability in the law probably impedes the development of an effective genetic information system