It could be a nosy neighbor questioning your ancestry. Perhaps it’s a lover who’s curious if you carry a gene for male pattern baldness. Or a rich grandparent checking if you’re genetically related.
All it takes to find out is a sample of DNA, or a person’s hereditary material, and some inexpensive testing. But experts warn thefts of DNA from a strand of hair or an item you touched are increasingly more likely, and you can become a victim without ever knowing it.
Florida lawmakers, hearing concerns about this new risk of technological underhandedness and personal privacy breaches, are poised to make the unlawful use of DNA a more serious crime.
A bill seeks to discourage the unauthorized use of DNA by changing it from a misdemeanor to a felony punishable by up to five years in prison. That could make it one of the toughest such laws in the nation.
Some legitimate purposes and exceptions are to continue: Police detectives may collect DNA during investigations, and family law courts can order DNA tests to establish paternity.
“This legislation is a first step to deter individuals who might steal DNA to gain access to your private information and then use it against you,” said Rep. Josie Tomkow, R-Polk City, while recently introducing the proposal.
Yet it’s unclear how prevalent DNA abuses have been, and whether any people have been prosecuted in the state under the existing law. Still, authorities say the potential is high, thanks to a proliferation of widely available genetic testing kits that have come on the market.
In recent decades, most privacy concerns revolving around DNA have involved efforts to prevent insurance companies from denying health coverage or raising premiums for people based on their genetic information. Federal law prohibits health insurers and employers from doing so.
Last year, Florida expanded the public protections to also stop life and long-term-care insurers from canceling, limiting or denying coverage on the basis of DNA results. The only exception is if a person has a specific medical diagnosis related to genetic information.
House Speaker Chris Sprowls said that enhanced law made Florida “the leader in the nation in protecting our residents and our citizens’ genetic information.”
But now there’s concern that DNA thievery could become a new criminal enterprise, unless offenders face the prospect of going to prison.
Elizabeth E. Joh, a professor at University of California, Davis School of Law, says an abundance of genetic testing services “increases the universe of people that might be affected by an instance of DNA theft.”
Joh, whose research has been cited during the crafting of the Florida legislation, envisions that some people might swipe DNA because they think they can be a hero and solve cold-case crimes. Or, they might have a more sinister motive such as blackmailing someone.
“If you have a motivated enough private individual, the tools are now there to engage in this on your own as a kind of private DNA amateur sleuth,” she told the South Florida Sun Sentinel.
While genetic genealogy websites are promoted as beneficial ways people can research their own ancestry, some people could try to use the science for darker purposes.
“Are they going to start taking DNA samples from anyone they don’t like?” Joh said. “You can have private DNA harassment, you can … raise a cloud of suspicion about someone. … These are all questions that are out there.”
The professor, who lectures and writes about criminal law, policing, and surveillance, says statistics about DNA theft are undocumented mainly because it’s not a crime on the books in most parts of the country.
“To the extent that a state like Florida says, ‘Look we want to clarify the terms of consent, we’ve decided as a state that this should be a crime,’ that actually is a good public conversation to have and I’m kind of surprised that more states haven’t addressed this,” Joh said.
The direct-to-consumer genetic testing industry has been watching the proposed state legislation.
Allison Liby-Schooner, a lobbyist for Ancestry.com, told a house subcommittee on criminal justice and public safety that the bill could be clearer about defining approved uses for DNA collection.
“Privacy and security are paramount for Ancestry.com and privacy and security of your genetic information is very important,” she said.
Life code of the rich and famous
While anyone can be at risk from DNA theft, examples also abound of famous people and celebrities caught up in sensational storylines over personal genetic information. This includes testing in the 1990s to explore a potential link between President Thomas Jefferson and the children of a slave he owned.
In 2002, there were British media reports of a plot to steal some of Prince Harry’s hair to verify Prince Charles is his father, and then sell the DNA test results to a news outlet.
Individuals claiming to possess Elvis Presley’s and President Barack Obama’s DNA have put items for sale online that they supposedly touched.
And then there is the cautionary tale involving Ike Perlmutter, a billionaire who is the chairman of Marvel Entertainment, creator of popular comic books, films and television shows.
In a true case resembling a movie plot, Perlmutter and his wife, Laura, had their DNA stolen in 2013 in South Florida, according to court findings.
It has been the subject of years of contentious litigation between the Perlmutters and Howard Peerenboom, founder of a Toronto-based international executive search firm. The adversaries were neighbors in the Palm Beach community of Sloan’s Curve.
During a feud that began in 2010 over the management of a tennis center, Peerenboom accused Perlmutter of being behind a series of hate mail.
A plan was hatched to see if Perlmutter’s DNA was on the mail. After the Perlmutters attended a deposition, Ike’s DNA was collected from fake legal papers he touched, and his wife’s DNA was taken from a water bottle, records show.
Attorneys for the Perlmutters later pointed out that in 2019 a disgruntled former employee of Peerenboom’s company was charged in Canada as the perpetrator of the hate mail.
Palm Beach County Circuit Judge Cymonie Rowe wrote that the plan to take the Perlmutters’ DNA without their consent was “contrary to our judicial process that requires honesty and transparency and fairness.”
Laws to be hatched
Joshua Dubin, one of the Perlmutters’ Miami-based lawyers, told the Sun Sentinel he hopes a judge will allow them to seek a jury award for punitive damages against Peerenboom and others involved, when the case goes to trial.
An attorney for Peerenboom could not be reached for comment despite an email and call to his office.
Meanwhile, Dubin has relayed his clients’ experience to lawmakers, encouraging them to pass the tougher DNA theft law. He said it ensures “this most sacred information about human beings remains the province and property of that individual unless and until they give their informed consent.”
Rep. James Bush, D-Miami, said he was stunned to learn about the “nefarious” theft of the Perlmutters’ DNA.
“Everything that embodies our being is in our DNA,” Bush said, “and we need to protect that under the law.”
Marc Freeman can be reached at firstname.lastname@example.org and on Twitter @marcjfreeman.
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