Genetic Privacy Laws
THIS DOCUMENT IS MAINTAINED ON THE NCSL WEBSITE FOR REFERENCE PURPOSES. THE INFORMATION IS CURRENT AS OF THE DATE BELOW, AND THIS DOCUMENT IS NOT BEING UPDATED.
Updated January 2008
Genetic Information: Legal Issues Relating to Discrimination and Privacy
Congressional Research Service, March 2008
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 17 states require informed consent for a third party either to perform or require a genetic test or to obtain genetic information. Twenty-seven states require consent 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 In 2001 Oregon repealed its property right to DNA samples and genetic information.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 19 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.
May only apply to life and individual disability insurance
Limits disclosures of and access to genetic information by employers and insurers.
Requires written authorization only
*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