Do You Have a Privacy Right to Your DNA?
You have enforceable property rights to your home, investments, artwork, and even your family pet. But when it comes to your DNA—the most intimate of all your personal possessions—all bets are off.
September 10, 2018 at 11:45 AM
5 minute read
You have enforceable property rights to your home, investments, artwork, and even your family pet. But when it comes to your DNA—the most intimate of all your personal possessions—all bets are off.
Today, you have almost no legal control over the unauthorized taking and use of your DNA, which can be easily extracted from the hair or saliva you leave behind at restaurants, stores, salons or just about everywhere else. You are mistaken if you think there are state or federal laws to protect your most personal possession. While Florida makes the unauthorized analysis of your DNA a misdemeanor, there are no reported cases evidencing enforcement of the law, and while unauthorized analysis of your DNA may be a misdemeanor, Florida does not prohibit the unauthorized taking of your DNA in the first place.
Further, Florida does not recognize a civil cause of action for the unauthorized taking or analysis of your DNA. There is little law or regulation to suggest that you have a protectable property interest in your DNA. By example, a Florida Appellate Court decided that human remains do not constitute property. In that case, the parents of their tragically killed son could not agree on the final disposition of his cremated remains. The parents were appointed as co-personal representative of their son's estate and sought the Probate Court's legal authority to decide the issue. The Probate Court determined, which was affirmed on appeal, that the cremated remains are not “property” and therefore outside the court's jurisdiction to decide. Since human remains are not “property” it would be challenging to successfully argue that your DNA constitutes “property,” and even if successful, how would compensatory damages be proven?
What about DNA samples voluntarily submitted to genealogy sites such as 23AndMe and Ancestry.com? Those submitting DNA samples to genealogy sites in hopes of finding long-lost relatives may find themselves the subject of medical research or maybe the subject of, or even an unwitting participant in, a criminal investigation.
“How can that be? I never consented to that!” you may be thinking. Don't be so sure. You may have provided permission to make your DNA available to third parties when you agreed to the genealogy site's terms of use, which are constantly changing, and which you, like most people, probably never read.
Which third parties may have access to your DNA? There's no way to know for sure. We have already seen Big Pharma team up with the genealogy sites, and we can expect to see other companies, such as marketing agencies and insurance carriers do the same in the near future. As a recent example, just last month GlaxoSmithKline announced that it invested $300 million in 23andMe to gain access to its DNA database. The pharmaceutical giant intends to use the 23andMe database in order conduct “research and development of innovative new medicines and potential cures, using human genetics as the basis for discovery.”
DNA profiles on genealogy sites have also recently been used by law enforcement to crack murder cases that have been cold for 30-plus years. Just a few months ago, investigators tracked down and arrested the infamous “Golden Gate Killer” by comparing DNA found at the crime scenes with samples submitted on a genealogy site. The site revealed a distant relative that led the authorities to the suspect. To confirm the suspect was a match with the DNA left at the crime scenes, law enforcement obtained DNA samples that the suspect left in a public place.
While most consumers agree that furthering medical research and enhancing law enforcement's crime-solving abilities are, of course, important causes, many are concerned about the Orwellian ability of law enforcement and other third parties to pry into their DNA— their most personal possession—without safeguards. But what can be done from a legal perspective to prevent it? Given the current state of the law—probably nothing. Especially in light of the fact that the consumer, whether aware or not, agreed to such use.
Clearly, new legislation is needed to govern the rights associated with an individual's DNA and its uses. Until then, the best advice is to take time to read the terms and conditions on genealogy websites before posting a sample, and be aware of other potential risks to your most personal possession.
Franklin Zemel, partner at Saul Ewing Arnstein & Lehr, focuses his practice on appellate law, business law, civil rights litigation, securities, antitrust, complex commercial litigation, and labor and employment law.
Ariel R. Deray, associate at Saul Ewing Arnstein & Lehr, focuses her practice on complex commercial litigation.
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