The Idea of a Right to Genetic Privacy

Genetic information is information about a person’s genes. That is to say, it is information about the biological material, not the biological material itself.[ Unfortunately, access to genetic information about a person on the part of other people or institutions may affect that person negatively. First, genetic information is relevant to a person’s health now and in the future, which means that a person with a genetic condition has reason to fear that he will meet with negative reactions from employers, insurance companies, the government, and others. Second, if, as seems to be the case, genetic information is also relevant to a person’s behavior, we have reason to fear that criminals with a genetic condition may be acquitted on the ground that they were thought not to be responsible for what they had done, and that individuals with a genetic make-up that would likely make them criminals will be rounded up and treated before they have committed any crime. Third, it is likely that the result of one person’s genetic test will be of interest to other people (his siblings, for example), and that therefore there will be disputes about who is entitled to know the results of the test. The question I want to consider in this article is whether the idea of a right to genetic privacy can be a useful analytical tool in the analysis of moral or legal problems that concern genetic information. For example, is an employer or an insurance company or a researcher who gains access to genetic information about a person from a DNA data bank guilty of violating his right to privacy? Is an employer who requires that his employees undergo genetic testing guilty of violating their right to privacy? Does a law that interferes with a person’s decision-making regarding personal, genetic issues violate his right to privacy? Etc. Some authors seem to think so, arguing as they do that our access to genetic information about other people ought to be circumscribed with the help of specific genetic privacy laws. I am inclined to agree, and I am going to argue that the idea of a right to genetic privacy, conceived of as a special case of the idea of a general right to privacy, can indeed be a useful analytical tool in the analysis of such problems, provided that we understand that right as a claim-right that covers so-called informational and physical privacy and nothing more