How Secure Is Your DNA?

DNA is so tiny, only a few microns across, that we often don’t spend much time thinking about how much of our most personal and private information it contains. Yet each individual’s DNA also offers an intimate look into family history, risk for illness, behavior, internal clock, propensity for thrill seeking, and countless other aspects of a person’s life, personality, behavior, and place in the world. Accessing this treasure trove of genetic information has some amazing benefits, but it also comes with some serious concerns.

While DNA may be small, it’s packed with information that has the potential to cause some pretty big problems. Uncontrolled access to this information, whether in a medical or law enforcement setting, could set individuals up for violations of privacy and discrimination, and as genetic testing becomes more common and inexpensive, the issues surrounding the protection of genetic information will become ever more pressing concerns in the larger public discourse.

Genetic privacy may not yet be a concern for most Americans, but as technology develops and practices change, it’s critical to know what risks you face as well as your rights, the laws that protect you, and how you can ensure your DNA isn’t be accessed and analyzed without your knowledge and consent.

DNA Law and Policy

While the structure and makeup of DNA has been known since the late 1950s, it was not until the 1970s that DNA was sequenced. It would would be nearly two decades before an efficient method of sequencing DNA would be developed, allowing it to be used outside of the scientific setting. Because the use of DNA profiling has only recently became practical for use in medicine and law enforcement, there aren’t yet that many laws that address the privacy and discrimination risks posed by genetic information. Here are just a few that have passed or are on the docket for the coming year that play a major role, or have the potential to, in the security of your DNA.

Also important to note are state laws on when and why DNA information can be forcibly collected. In all 50 states, those who have been convicted of a felony of any kind must submit DNA to both the national CODIS database and state databases. Yet policies differ from state to state with regard to when DNA evidence can be collected from those who are accused or arrested for a crime and have not yet been convicted. In 28 states, arrestees can be subject to DNA collection. Thirteen of those states collect samples for anyone arrested for a felony while the rest limit collection to violent crimes, including sexual assaults. Seven states also collect DNA for certain misdemeanors.

While this might help in solving crimes, it also poses some privacy issues. Probable cause is only required in 11 states to obtain or analyze a sample from an individual who has been arrested for a crime. More troubling, perhaps, is that even if an individual is acquitted of the charges, DNA information remains in the system unless the accused requests for it to be expunged; the state does not take responsibility for removing DNA evidence from those who have been judged innocent.

Court Cases on DNA

Laws regarding DNA and the collection of genetic materials have been hotly contested over the past decade. Many believe that current state laws infringe on the Fourth Amendment and are tantamount to unreasonable search and seizure. Others have argued that DNA laws violate the Fifth Amendment, with the obligation to provide DNA evidence acting as witness against the accused him or herself. To date, many major cases involving DNA are still being addressed by the Supreme Court. Here are just a few that may shape federal and state law over the coming years or that have already impacted DNA privacy, criminal law, and genetic policy nationwide.

This is hardly a complete list of all the major cases involving DNA testing and genetic privacy. For a great history on the subject, read a breif summary of major cases from Rhode Island College. For more information about major court cases on DNA around the world as well as some older cases here at home, check out the Electronic Privacy Information Center’s collection of important cases that have impacted genetic privacy all over the world.

When Your Genetic Privacy Is at Risk

While much of DNA law has to do with those who’ve committed a crime or been accused of committing a crime, the reality is that your genetic privacy can be at risk even if you’re a law abiding citizen. There are a number of cases when your DNA can be collected, analyzed, or retained without your consent.

How to Protect Your DNA

While it’s useful to know what laws protect your genetic information and when it’s at risk, it is perhaps more important to know what you can do to ensure that your genetic information is kept safe and confidential, unless you choose to share it, that is.

 

Much of the legislation and public policy regarding genetic privacy is still in its early stages, but as technology evolves and genetic testing becomes increasingly more common, how genetic data is handled, who has access to it, and the privacy rights of individuals will become increasingly more important. If you haven’t considered the risks posed by unsecured DNA information before, now is the time to look into protecting yourself and ensuring that your information isn’t being used, shared, or stored in ways that put your privacy at risk. While you may never face a serious issue with regard to your genetic privacy, it never hurts to be cautious and know your rights.