What if the story of your life was written at birth- a “future diary” available for someone to read? The decoding of the human genome over a decade ago held the promise of defying our genetic destiny, but it also foreshadowed some significant ethical issues on the horizon. This month, California legislators addressed some of these concerns in the Genetic Information Privacy Act (SB 1267). The proposed bill would guard against covert DNA testing by requiring written permission from California citizens before collecting, analyzing, storing or sharing their genetic information. Any such data obtained with permission could only be used within the scope of the permission given by the DNA owner, after which the DNA samples would have to be destroyed.
On August 25, 2011, the Massachusetts Appeals Court, in a case of first impression, ruled that the state crime lab’s retention of an individual’s DNA sample beyond the limitations promised to him by the police when they took the voluntary sample state a claim for invasion of privacy, and for violation of the state’s Fair Information Practices Act (“FIPA”). The case, Amato v. District Attorney, No. 10-P-354 (Mass. Ct. App. Aug. 25, 2011), is a significant win for privacy advocates and the Firm. Proskauer partner Mark Batten and former associate Sandra Badin handled the matter with assistance from the Firm’s pro bono partner, the ACLU.
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.