~ FROM BACKGROUND CHECK.ORG
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.
- Genetic Information Nondiscrimination Act:Enacted in 2008, GINA prohibits the use of genetic information in health insurance and employment. This means that health insurers and group health plans cannot deny coverage or charge higher premiums to an individual based on a genetic predisposition for developing a particular illness. It also ensure that employers cannot make any decisions with regard to hiring, firing, promotion, or job placement based on genetic data.In light of the recent growth of genetic testing, however, many think GINA needs amending. Provisions have been proposed that will help protect genetic information from being used to discriminate in life or long-term care insurance coverage and will ensure that data from genetic testing is not disseminated in research studies or other ways without an individual’s consent.The state of California has already passed state-specific laws of this nature that will ensure DNA can’t be used to discriminate in the areas of housing, education, public accommodations, life insurance, mortgage lending, and elections, so it may only be a matter of time before federal laws follow suit.
- DNA Identification Act of 1994: The DNA Identification Act was among the first laws to address the establishment of federal databases of DNA information, passed into law in 1994. The act authorized the creation of CODIS, a national database of DNA identification records of persons convicted of crimes, the analysis of DNA samples recovered from crime scenes, and the analysis of DNA samples taken from identified human remains. The act was modified in 2004 by the Justice for All Act, which expanded the offenses for which DNA could be collected, created a new system of indexing, and required national accreditation for forensic laboratories.
- DNA Fingerprinting Act of 2005: The DNA Fingerprinting Act allowed the national CODIS database to include samples from any individual from whom collection was authorized under state law. It also made it permissible for DNA to be collected from federal arrestees and from non-U.S. detainees. As a result, criminal DNA databases have rapidly expanded, with nearly all states and the federal government maintaining their own systems today. It has not been legislation without criticism, however. Some argue that it has unjustly allowed for the cataloging not only of convicted individual’s DNA but also that of those accused or arrested for a crime.
- California Genetic Privacy Law: One state that is working hard to protect the genetic privacy of its constituents is California. Authored by state senator Alex Padilla, the law would help protect genetic information from being used without consent, requiring research and health organization to acquire consent to collect, share, and retain genetic material and information. In 2006, Minnesota passed a similar law and over the past year South Dakota, Alabama, Massachusetts, and Vermont have all proposed related bills that would define genetic materials as personal property. As of yet, none of those bills have become law.
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.
- Maryland v. King: This case is currently under review by the Supreme Court after the justices agreed it to hear it late last year. Previously, Maryland’s top court ruled that taking DNA from individuals arrested, but not convicted, for a serious crime was a breach of the Fourth Amendment right against unreasonable search and seizure. If this decision is upheld, laws in 21 states and federal law enforcement practices could be impacted, and in the future, law enforcement officials would be required to procure a warrant prior to obtaining DNA evidence from suspects in a case.
- Bearder v. State of Minnesota: The Minnesota Supreme Court found the state’s own department of health in violation of the law for failing to dispose of blood samples routinely used to screen newborns for serious illnesses. In some cases, the samples were used to validate new genetic tests, a clear violation of the state’s Genetic Privacy Act.
- Washington University School of Medicine v. Catalona: In 2008, the Supreme Court ruled that tissue and serum samples donated to the school could continue to be used for cancer research and that donors could not require that the samples be transferred elsewhere, as former Washington University surgeon William Catalona had argued. This is significant for DNA privacy, as it acknowledges that once samples are donated that they become the property of the institution, not the donor.
- Kohler v. Englade: DNA dragnets faced a major legal challenge with this Louisiana case. In 2003, Shannon Kohler was asked to submit a DNA sample by Baton Rouge police. His refusal led to him being named as the primary suspect in a serial rape and murder case. Kohler eventually provided DNA and was cleared of the charges, but alleged that the police didn’t have probable cause to compel him to give up his DNA. The Circuit Court of Appeals agreed, saying that the probable cause provided by law enforcement was so broad that it would have encompassed thousands in the Baton Rouge area. This decision helped to toughen the circumstances under which a warrant for DNA evidence could be granted, at least in the state of Louisiana.
- District Attorney’s Office v. Osborne: Oddly enough, while the courts have largely upheld the right of law enforcement to compel those who have been arrested or convicted of a crime to give DNA, once individuals are convicted of a crime, they do not have a constitutional right to their own DNA evidence nor that collected from the crime scene. In older cases, this means that DNA evidence cannot be reanalyzed using better, more accurate methods; a practice that has already exonerated many behind bars. According to the Supreme Court ruling in 2009, individuals do not have the right to post-conviction access to State’s evidence for DNA testing, making it impossible to exonerate those who may have been convicted falsely. Luckily, while the federal government does not mandate this, many states do allow for post-conviction DNA analysis.
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.
- DNA dragnets:You don’t have to be accused of a crime in some cases to have your DNA requested by law enforcement. DNA dragnets occur when law enforcement officials as hundreds, sometimes thousands, of (presumably) innocent people to give samples of their blood or saliva in the hopes that one will be connected to a crime. While individuals can refuse to give DNA, in some cases the courts have forced compliance and most who refuse have faced increased scrutiny as a suspect in a crime, despite the fact that many see the request as an invasion of privacy.DNA dragnets aren’t especially common in the U.S., but in other places, like the U.K. and Germany, they have become common practice. In one case, DNA was collected from 16,000 individuals. While dragnets have been helpful in identifying the perpetrators of several high profiles cases, some who’ve been forced to partake say the dragnets have had unexpected consequences and have petitioned to have their DNA returned after being cleared.
- Discarded DNA: Directly giving a sample isn’t the only way for law enforcement officers to get a sample of your DNA. If your saliva is transferred onto another object, which you then discard, that object can be legally collected and used to analyze your DNA. While this practice has been challenged, it has held up in court because law enforcement officials state that there can be no reasonable expectation of privacy with regard to items that have been discarded. Not worried that the police will come after your DNA? Be aware that stray DNA could also be accessed by others looking for genetic information, like family members or those seeking to establish paternity.
- Family member searches: Another occasion when an innocent person may have their DNA requested by law enforcement is when a member of your family is suspected to be guilty of a crime, but no DNA can be gathered from that person because he or she can’t be found. In these cases, sometimes close family members are asked to submit their DNA to look for matching elements. If you wish to aid law enforcement, make sure that your DNA sample will be destroyed after it is analyzed, not stored.
- Participation in studies: Currently, few states have laws that protect genetic data once it has been collected and analyzed for research. This means that genetic material can be reused in future studies, transferred between institutions, or disseminated without the permission of the original donor. This doesn’t mean that individuals shouldn’t participate in research, but they should find out in writing before the study what will be done with their genetic information. Studies have shown that DNA data alone can easily be used to figure out an individual’s actual identity, a fact that could influence insurance and employment opportunities.
- Elective genetic testing: Many worried about genetic condition opt to have their DNA sequenced by a private company. This can be beneficial, but it does come with risks. Not all DNA testing facilities have airtight privacy policies and some may do little to ensure your information stays confidential. If you submit to testing from a service, you may also be opening yourself up to these records being obtained by insurance companies or other outside sources. Once those records are out there, it’s very hard to get them back.
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.
- Always know the privacy policies of genetic testing companies. Getting genetic testing done through a private company is increasingly common, as prices have plummeted and access to these companies has increased. While these businesses do provide an opportunity to learn more about your health, they also pose a risk to your privacy if you’re not careful. Before submitting any samples to a company, carefully examine their privacy policy to see what it says and check out the business through the Better Business Bureau and TRUSTe.
- Know your rights under the law. We’ve outlined the major legislation that protects your genetic privacy above, but it doesn’t hurt to do additional research as well. The better you know what your rights are under state and federal laws, the better you can protect your personal and private health information. For additional information on privacy as a patient, learn more about HIPPA, which while not DNA specific does ensure that knowledge of your health issues can’t be shared.
- Don’t freely give out health information. Unless you are protected under law, do not share your personal family history or genetic information with others. In some cases, like when applying for life or long-term care insurance, this information can be used to discriminate against you. While GINA and other laws may protect you, there is no guarantee that sharing your genetic information won’t result in discrimination, so it’s best to always keep it to yourself unless absolutely necessary.
- Keep records about your DNA in a secure location. If you opt for DNA testing of any kind, especially that which looks at your risk for certain conditions, make sure to keep these records in a secure location that can’t be accessed by others. While you hardly need to worry about thieves, you do want to keep anyone who may be snooping around your home from finding out private information about you.
- Ensure that any research studies you participate in will keep data confidential. Sometimes, those suffering from certain diseases will choose to participate in research studies that collect genetic data. This can be an incredibly beneficial way to make strides in understanding and treating these conditions and others like them, but it does compromise DNA privacy. While not everyone will care about this, those who do will want to ensure that any studies requesting this kind of information will keep it confidential and, in some cases, you may even want to request that genetic material not be retained after the study is complete.
- Ask questions. You don’t have to agree to take part in a study for genetic information to be gathered on you. That’s why you should ask your doctor or health care professional if certain medical procedures will require genetic testing and find out in advance what his, her, or the medical facility’s policy is on personal genetic information.
- Seek legal recourse. If you believe your genetic information has been compromised in a way that violates your personal privacy and the law, contact a lawyer who can help you address these issues. You can also file a complaint with federal and state agencies for certain violations as well.
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.
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