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State Genetic Privacy Laws
The majority of state legislatures have taken steps to safeguard genetic information beyond the protections provided for other types of health information. This approach to genetics policy is known as genetic exceptionalism, which calls for special legal protections for genetic information as a result of its predictive, personal and familial nature and other unique characteristics. Some commentators assert that treating genetic information the same as other health information is a more favorable approach. These individuals argue that genetic information is simply another form of health information and is, therefore, difficult to distinguish from other health information, all of which deserves equal protection under the law. With respect to privacy, Washington is the only state that explicitly treats genetic information the same as other health information by including genetic information in the definition of health care information under the state health privacy law.*
State genetic privacy laws typically restrict any or certain parties (such as insurers or employers) from carrying out a particular action without consent. Laws in 16 states require informed consent for a third party either to perform or require a genetic test or to obtain genetic information. Twenty-four states require informed consent to disclose genetic information. In addition, Rhode Island and Washington require written authorization to disclose genetic information. Alaska, Colorado, Florida, Georgia, and Louisiana explicitly define genetic information as personal property. Alaska also extends personal property rights to DNA samples. In 2001 Oregon repealed its property right to DNA samples and genetic information. Four states mandate individual access to personal genetic information, and 18 states have established specific penalties - civil, criminal or both - for violating genetic privacy laws.
The states with genetic privacy laws listed below also may have laws concerning other, related genetics policy issues, such as the use of genetic information in insurance and employment. The legislature may have addressed these issues in conjunction with genetic privacy or separately. For a full understanding of genetics law in a particular state, please go back to the Genetics Laws and Legislative Activity page and click on the other topical tables. You also may want to view maps on state genetics laws created by Backbone Media for the PBS program Bloodlines. NCSL does not necessarily endorse any of the views expressed at the Bloodlines Web site or in the program.
1 Limits disclosures of and access to genetic
information by employers and insurers.
*Washington State has a genetic specific employment discrimination law.
NOTE: NCSL updates its legislative activity at least once a month. This table is updated whenever new legislation is enacted. For pending genetic privacy bills, please see NCSL's Genetic Legislation Database.
Source: NCSL, StateNet
For additional information, please contact:
© 2005 National Conference of State Legislatures, All Rights Reserved
Denver Office: Tel: 303-364-7700 | Fax:
303-364-7800 | 7700 East First Place | Denver, CO 80230 | Map
Washington Office: Tel: 202-624-5400 | Fax: 202-737-1069 | 444 North Capitol Street, N.W., Suite 515 | Washington, D.C. 20001