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Genetic Ownership Rights

Americans overwhelmingly support genetic privacy and control over their genetic information. A 2000 Gallup survey found that most adults (86%) believe a physician should ask permission first before running tests for genetic factors. Moreover, over nine in ten adults (93%) feel medical and government researchers should first obtain permission before studying a person’s genetic information.

It is important to realize, however, that without genetic ownership rights, researchers theoretically could maintain an individual's genetic privacy but inappropriately use that person's DNA for cloning. In other words, a law that addresses genetic privacy but ignores genetic ownership will not necessarily prevent individuals' genetic information from being used inappropriately.

Moreover, David Vise, co-author of The Google Story, reports that has been working with Craig Venter (of human genome-mapping fame) to enable people to search through their own genetic make-up via the Internet.

The forthcoming computerization of genetic information raises important ethical questions: who owns your genetic information, and where will that information be stored? Genetic ownership is clearly a key issue for Americans to address soon.

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(Summary updated November 2009)