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Who owns genetic information?

In some types of medical research, genetic information extracted from human tissue is very valuable for determining gene function in certain diseases (ex: cancer, arthritis, cardiovascular disease, neurological disorders, etc.) Genetic information is essentially biological data inherent in human tissue and bodily fluids. There is much ambiguity with regard to ownership of genetic information. One issue is that one's genetic information is partly shared with one's biological relatives. Hence, one's genes tell us not just about the individual but also about others (family members), for example their risk for developing certain diseases.

There is no federal law for the protection of genetic information. There have been many attempts to protect genetic information since the Model Genetic Privacy Act of 1995. The most recent bill is Senate bill S. 1053, the Genetic Information Nondiscrimination Act of 2003. In the absence of federal law, genetic privacy issues tend to be regulated at the state level with regulations varying widely. In general, a model of individual autonomy prevails in research. This means that one's genetic information belongs solely to the individual and researchers ought to protect the confidentiality of this information. For instance, Oregon's Genetic Privacy Law asserts that "an individual's genetic information is the property of the individual." The only exception to this view is de-identified or anonymized samples. It is important to note that the genetic privacy legislation is evolving and one should check state laws (see: National Conference of State Legislatures website: www.ncsl.org: Home> State & Federal Issues> Health: health care> Genetics> State Genetic Laws> then navigate to Health Insurance, Life Insurance, Long term care insurance, Disability Insurance and Employment Discrimination.)

Key Point: Is it generally assumed that individuals have the right to control access to their identifiable genetic information.

Key Point: The right to privacy which includes the confidentiality of medical records includes protection of genetic information.

Key Point: State laws on genetic privacy vary widely (see link above). There are general state privacy laws that cover all breaches of privacy.