We pack tons of personal and sensitive information in our DNA. While the human genome has been mapped for a decade, legal issues of genetic privacy are just beginning to rise. Earlier this month, the U.S. Supreme Court decided what Justice Alito described as “perhaps the most important criminal procedure case that this court has heard in decades.” The case addressed whether police could constitutionally take a DNA sample from a person arrested for a serious crime, and in a 5-4 decision, the Court ruled that DNA collection serves the legitimate government interest in identifying arrestees. In the majority opinion, however, Justice Kennedy noted that, “If in the future police analyze samples to determine, for instance, an arrestee’s predisposition for a particular disease or other hereditary factors not relevant to identity, that case would present additional privacy concerns not present here.”
The popularity of crime dramas on primetime television schedules has made certain aspects of genetic testing commonplace and uncontroversial. However, as science continues to advance at an exponential rate, and as technology and innovation have invaded the realm of individual privacy rights, individuals’ genetic make-up are likely the next frontier.
At least 32 states have genetic privacy laws on the books. These states have taken steps to protect genetic information beyond the protections given to other types of health information. This is referred to as “genetic exceptionalism,” which calls for special protections for genetic information due to its predictive, personal and familial nature and other unique characteristics. Generally speaking, state genetic privacy laws restrict parties (such as insurers or employers) from taking a particular action without consent. These laws cover a broad range of issues, including:
- Requiring personal access to genetic information;
- Requiring consent for performing tests, obtaining or accessing genetic information, retaining genetic information, and/or disclosing genetic information;
- Defining genetic information or DNA samples as personal property; and
- Providing for specific penalties for genetic privacy violations.