You Can’t Make This Stuff Up

Take two extremely wealthy business moguls, both members of a swanky gated community in Florida, and have them fight over who gets to manage the local tennis courts. Now mix in a hate-mail campaign, a series of rancorous lawsuits, and accusations of a coverup. Remarkably, this combustible mix has somehow raised the question — one that U.S. courts have wrestled with for decades — of whether individuals have property rights in their DNA.

Peerenboom v. Perlmutter, now in its fifth year of litigation in the 15th Judicial Circuit Court of Florida in affluent Palm Beach County, has all the tawdry elements of a 1980s made-for-TV movie on the Lifetime network. Here is an extremely abbreviated summary: Harold Peerenboom, a Toronto businessman (the founder of a major headhunting and consulting company) and a resident of Sloan’s Curve, an über-posh Palm Beach waterfront community, and another resident, wanted a competitive bidding process to determine who would manage the community’s tennis center. However, fellow Sloan’s Curve denizen and chairman of Marvel Enterprises, Isaac “Ike” Perlmutter was happy with the way Karen Donnelly had been running the center for many years. With funding from Perlmutter, Donnelly eventually sued Peerenboom, claiming he had slandered her at community board meetings. Peerenboom then began receiving hate mail — more than 1,000 letters in all. Moreover, Sloan’s Curve residents and Peerenboom business associates received letters accusing Peerenboom of heinous crimes, including child molestation and murder. In 2013, Peerenboom filed suit against Perlmutter and his wife, accusing them of orchestrating the campaign. The Perlmutters recently admitted sending a few unflattering articles about Peerenboom to friends in 2011.

In an attempt to gather evidence that the Perlmutters were indeed the culprits, Peerenboom and his attorney at the time, William Douberley, set out to surreptitiously (and, per the court, “fraudulently”) collect DNA from the Perlmutters in order to compare it to DNA extracted from the hate-mail envelopes (analysis and reporting of results from such collections is illegal in Florida). Peerenboom enlisted Douberley to subpoena the Perlmutters and depose them as part of the Donnelly lawsuit. During the deposition, the Perlmutters handled documents that, at Peerenboom and Douberley’s behest, had been supplied by a forensics laboratory and coated with chemicals designed to capture their DNA. Peerenboom and Douberley also collected water bottles handled by the Perlmutters at the deposition. They then sent the samples to a forensic lab for genetic testing. The Perlmutters allege that the initial results appeared to exclude them as matches to the hate mail and that a second lab came to the same conclusion. They further allege that, under pressure from Peerenboom, the first lab revised its conclusion to say that Mrs. Perlmutter “[could not] be excluded” as a suspect. Earlier this year the Perlmutters’ legal team accused Peerenboom and a business partner of attempting to frame the Perlmutters after police intercepted a packet of fresh hate mail that the business partner had sent from Toronto to Florida. It was addressed to Peerenboom’s wife and employees of his company.

Been Caught Stealing?

In 2016 the Perlmutters countersued Peerenboom and Douberley (as well as the insurance company Douberley works for and the forensic lab whose interpretation of the DNA tests allegedly implicated the Perlmutters) for, among other things, conversion. In U.S. courts, “conversion” refers to “the exercise of wrongful dominion or control over property to the detriment of the rights of the actual owner.” Sounds a lot like theft, no? That’s because it is.

“ ‘Conversion’ is a fancy word for stealing stuff,” says University of North Carolina (UNC) law professor John Conley, who has written at length about the control of genomic information. “It’s turning someone else’s property to your use without their permission.”

This raises the six-billion-base-pair question: Is DNA property?

At first glance, the answer would appear to be yes. After all, why would surreptitiously swabbing someone’s DNA be any different than surreptitiously pickpocketing their wallet?

“As far as I know,” Perlmutter attorney Roy Black said in May, “[this] is the first case in the U.S. of theft of DNA.”

For her part, Judge Meenu Sasser agreed that the Perlmutters do indeed have some sort of ownership rights in their DNA. In her January 2017 decision to let the Perlmutters’ counterclaim go forward, she wrote:

“The Perlmutters plainly retain intangible rights to their genetic information … at the very least, one possesses important privacy interests in such information.”

According to Jennifer Wagner, a lawyer and the associate director of Bioethics Research at Geisinger, Judge Sasser’s framing is important because previous decisions that failed to find property rights in biospecimens — cancerous spleens, prostates, and DNA samples, among others — focused solely on the samples themselves. “The Perlmutters did not claim exclusive possession and title (i.e., ownership) of their DNA. They [instead] claimed ownership of the genetic information contained in their DNA.” By doing so, says Wagner, they made it easier for Judge Sasser to ignore the earlier cases.

The information-versus-sample distinction is one key difference between Peerenboom v. Perlmutter and previous legal wrangling over who controls an individual’s biology and especially what happens to it once it leaves the body. Another difference, says Jessica L. Roberts, the director of the University of Houston Health Law and Policy Institute and a George Butler Research professor, is Judge Sasser’s emphasis on privacy. “The [Florida] court said that people have important privacy interests [in their DNA and that having property rights] is one of the ways to protect privacy.” In the earlier cases, she notes, judges fretted about the possible negative consequences for research if they recognized property rights in biospecimens.

At least until Rebecca Skloot’s bestselling book about cervical cancer patient Henrietta Lacks and the extraordinarily useful HeLa cells that came from her tumor, the most famous biospecimen case was that of John Moore, who was treated at UCLA Medical Center for hairy cell leukemia in the 1970s and 1980s. Moore’s cancerous spleen was of both scientific and financial interest to the doctor who removed it, because his spleen’s T cells could stimulate the production of a protein that, in turn, induced the growth of two types of white blood cells that fight bacteria and perhaps even cancer. In the 1980s, Moore took the doctor and UCLA to court in an attempt to secure a share of the potential profits derived from the patented cell line developed from his spleen for commercial purposes without his knowledge or consent. After a lengthy appeals process, in its 1990 decision in Moore v. Regents of the University of California, the California Supreme Court agreed that Moore’s doctor was obligated to tell his patient what he was up to. But on the property question it sided with UCLA — John Moore was found to have no property rights whatsoever in his cells.

“[So far] Perlmutter has come out the opposite of Moore,” says Roberts. “The [Perlmutter] judge is not using the same economic analysis as used by the judges in Moore. This case is more about privacy. I think that’s novel.”

Everybody Hurts

But are such property rights in genetic information, whether to ensure privacy or anything else, good for biomedical research? University of Utah law professor Jorge Contreras says no. One of the rights that comes with owning property, he points out, is that the owner can exclude anyone and everyone who would like to use it, no matter how noble the user’s intended purpose or how minor the imposition on the donor might be. In particular, Contreras is concerned that research participants might wake up one day and capriciously decide that they don’t want their data being used any longer and demand that it be removed from research databases. Having to comply with such demands, says Contreras, “damages statistical conclusions and imposes a huge cost and burden on the research community.”

Contreras points to a series of legal disputes in which civil rights activists and parents successfully sued several state newborn screening programs for using blood spots left over from newborn screening for research without parental consent. In Texas, for example, as part of a settlement the state agreed to destroy more than five million newborn blood spots that were collected without informing parents how and by whom they would be used.

While Contreras acknowledges that the families in these cases should have been kept in the loop, he believes that the destruction of samples and the cessation of research hurt everyone. “Everyone benefits from medical research,” he says.

Johns Hopkins pediatrician, attorney, and bioethics scholar Michelle Huckaby Lewis points out that, at the time, neither federal nor Texas law required parental permission for research use of the dried blood spots. She says that the law now requires parental consent, and dried blood spots are now legally considered to be “human subjects” for the purposes of research. (After the Texas case settled, lead plaintiff Andrea Beleno told The New York Times, “The irony is, if you had asked me, I probably would have consented.”)

Contreras offers a potential solution to the barriers created by ownership of samples and data, and by requirements that researchers ask for either permission or forgiveness. He would like to see the U.S. transition from a property-based system that empowers research participants to say “get off my lawn,” thus potentially slowing the pace of research, to a system based on liability. In such a system, he says, researchers who behave badly toward participants would be punished. But the research, assuming it met all of its other obligations, could continue.

“Suppose that, while you’re sleeping, I take a saliva swab from your cheek, sequence your DNA, and upload it to a public database like GenBank,” says Contreras. “In a property-based system you can get that data erased from GenBank [and research suffers]. [But] in a liability-based system I am penalized and maybe I’m debarred [for taking your sample without permission]; I might suffer all sorts of severe penalties. For example, maybe I’m not allowed to do research [at all]. But the data, once it’s out there, [I think it should continue] to be used.”

As for Perlmutter, Contreras says that he is not a fan of surreptitious DNA collection — it constitutes an invasion of privacy akin to having your picture taken without your permission. But, he says, we expose all sorts of information about ourselves just by living in the modern world, and the onus is increasingly on us to protect ourselves. “If you don’t want someone rooting around in your trash, then burn it. And if you’re that concerned about genetic privacy, then don’t leave your Starbucks cup lying around.”

Do You Want to Know a Secret?

A few years ago UNC law professor John Conley and his colleagues hit upon a different way to think about individual biospecimens and data: as a trade secret. They were reviewing transcripts of several dozen interviews with potential biobank recruits that had been conducted by other UNC researchers. Half of those interviewed agreed to join, while half declined to participate in a biobank. In explaining why they didn’t want to participate, the biobank decliners brought up two concerns that struck Conley and his co-authors.

“They were saying things like ‘DNA is a piece of my essence’ and ‘DNA is me,’ ” Conley remembers. “And the second thing was that some wanted a measure of control over the uses [of their samples]. There was a lot of concern about [future] disclosure. A number wanted money, or at least more money than they were getting. It occurred to us that these arguments looked a lot like a negotiation for a trade secrets license.”

Among history’s most notorious trade secrets is the formula for Coca-Cola. For years after Coke was invented in 1886, its formula was allegedly never written down. When the company was sold in 1919, it was finally committed to paper and used as collateral to finance the purchase. Once the loan was repaid, the formula was kept in a bank vault in Atlanta for 86 years, before being moved to the company’s World of Coca-Cola Museum.

Obviously Coke has done very well for itself by opting to keep its formula a secret. While Conley doesn’t pretend that individuals could ever leverage their genomes or medical records in a way that would bring them Fortune 500-size wealth (more on that in a minute), he can imagine people choosing to license access to their genomes on a sliding scale. “[In one scenario] I could sell my sample and data to you outright and you could do whatever you wanted with them. On the other end of the scale, I could impose a lot of restrictions on what you could do with them, but that’d mean lower compensation for me.”

Conley and his co-authors proposed the trade secret model as a thought experiment. For the most part, he says, their bioethics colleagues have been unimpressed. “I remember presenting it at a conference and it was like I was proposing the sale of children — a lot of people were really upset with it.”

He believes that the vocal objections were, at least in part, a visceral reaction against the idea of money as a motive for participating. “But money is a huge motive,” Conley says.

Of Base Pairs and Benjamins

In 2012 longtime biotech entrepreneur Cliff Reid brokered the sale of Complete Genomics, the sequencing company he had co-founded in 2006 and taken public a few years later, to Chinese sequencing behemoth BGI-Shenzhen. The two entities had already sequenced tens of thousands of people (full disclosure: I’m one of them). But by then genome sequencing was becoming a low-margin, commodity business, and BGI was up against Illumina, a company that would prove to be a competitor. Reid began to look further downstream. In 2014 he had a series of meetings with then-BGI CEO Jun Wang.

“We kind of stared at each other and said, ‘No one has cracked the code on consumer genomics yet,’ ” Reid remembers. “ ‘So let’s think about it hard.’ At the time we couldn’t even spell the word ‘consumer.’ ”

BGI brought on legendary firm Frog Design (hired by Steve Jobs to design the iPhone) to investigate what consumers wanted and expected from their genomes as products and how that might inform BGI’s business model. The company also recruited industry veterans from Uber and Stubhub, as well as Stanford Nobel laureate Alvin Roth, an economist with deep knowledge about market design.

In focus groups, Reid and Wang gleaned the same insights that John Conley and his academic colleagues had picked up in their interviews with potential biobank participants. “Two things resonated with consumers,” Reid says. “One was the idea that they completely owned their own data. And the second thing was that they really liked the idea of some monetary reward.”

In late 2016, Genos — the tiny consumer division of Complete Genomics — launched as an independent company. Consenting customers would “receive transparent compensation for research studies in which they participate[d].” And they would retain full ownership rights to their samples and exome data.

“We wanted to be at the far end of the spectrum,” says Reid. “Any [Genos customer] could roll out of bed, decide that they wanted out, and hit the delete button. They would get [their data], they would own it, and they could shut it down at any time.”

The trade secret model was finally going to be tested in the real world. Would it make money for individual genome sellers?

So far, the answer seems to be not much and not yet. An October 2017 visit to the Genos website found customer compensation for participating in research to be in the $50 to $250 range. Reid says that, while he was involved, Genos wound up sequencing a few thousand people. “But that’s not a business. We needed tens of thousands or hundreds of thousands of people. We needed to get the sellers in the system before we recruited the buyers. As Alvin Roth explained to us, these two-sided markets are chicken-and-egg problems — you have to get both sides rich and engaged. We didn’t get there.”

Earlier this year Genos was sold for an undisclosed price to molecular diagnostics firm NantOmics, a subsidiary of billionaire physician and entrepreneur Patrick Soon-Shiong’s NantWorks suite of healthcare and biopharma companies. Mark Blumling, co-founder and CEO of Genos, said in the April acquisition announcement that joining forces with NantWorks would “help accelerate the field of precision medicine and precision health.” The company did not respond to multiple requests for comment.

For her part, the University of Houston’s Roberts thinks the emphasis on money misses the point. “Too often we tend to see people as ‘rational actors’ who are thinking in purely economic terms.” She argues that we should look at our DNA and the data derived from it through different lenses. “There are other things to consider,” she says. “Things like dignity, privacy, and autonomy.”

And Roberts is not surprised by the lack of a vibrant market for individual samples. “The John Moores and Henrietta Lackses of the world — people whose cells have commercial value — are few and far between. For most of us, our data is only valuable in the aggregate.”

I Me Mine

In February 2016 President Barack Obama told a White House gathering, “I would like to think that if somebody does a test on me or my genes, that that’s mine, but that’s not always how we define these issues.”

John Wilbanks was in the room that day. “What I heard the President saying was, simply, ‘I’d like to have some rights.’ Unfortunately, when we’re talking about DNA, we don’t tend to go to civil rights, we tend to go to property rights.”

Wilbanks, who is Chief Commons Officer at Sage Bionetworks, a nonprofit seeking to foster open systems of biomedical research, says that property rights in DNA are especially tricky and context-dependent, in part because DNA exists both as a physical object and as digital information that can be easily copied. “If I find your USB stick with your genome sequence on it on the bus, then I can put your DNA online, and you can’t sue me. It’s always the transition from the digital to the physical that gets weird. And of course, we spray our DNA everywhere without realizing it.”

Stanford University Law School professor Hank Greely agrees that human biology does not fit neatly into the property box. “Do you own your kidney?” he asks. “Well, kind of. No one can take it from you without your consent, but neither can you sell it.”

And, he says, the same awkward fit holds true for data. “I’d like to think that I own my electronic health record, but do I really? I can’t keep the hospital from using it, or sharing it with an insurer, or giving it in de-identified form to a researcher, or giving it to the FBI if the FBI asks.”

Part of the reluctance to embrace ownership of human biology in some quarters, Greely says, is because of its ugly connotations. “Owning kidneys makes people think of slavery. They think it degrades humanity.” He understands this argument but also finds it to be ironic. “Doesn’t it degrade the dignity and authority of individuals to say that they don’t own their own cells?”

Both Wilbanks and Greely see more trouble on the horizon. Wilbanks, a self-described dystopian, believes that science fiction writers have anticipated much of the current ownership kerfuffle. He points to David Zindell’s 1989 novel Neverness as an example. In it Zindell coined the phrase “slelling,” which means “to take DNA from someone against his will.” Thus, it would seem that Perlmutter was slelled by Peerenboom. Wilbanks thinks that court dockets are going to be filled with lots more slelling in the future. Perlmutter, he says, is a harbinger of “the next war.”

The blood spot case in Texas, Greely contends, is likely a similar kind of omen. In his view there is a real disconnect between what people think their rights are to their samples and data, and what they actually are. “It’s the difference between what the law says and what people think it says. I’ve been predicting an explosion in this area for 20 years. The blood spot case was a hand grenade.”

And whither Perlmutter? At press time both parties were still going at it: filing motions, stating objections, taking depositions, and amending claims and counterclaims. Greely emphasizes that, whatever the court in Palm Beach ultimately decides about individual ownership claims to genetic information, the case is being presided over by a single trial court judge in a single state and that what’s at issue is a single dispute, however titillating that dispute might be. “Court decisions about property don’t say anything about you versus the whole world. They’re only about that plaintiff versus that defendant.”

Conley describes Peerenboom v. Perlmutter as a case being litigated by “people with more money than sense.” But he too looks forward to the eventual outcome. “Embedded within it,” he says, “is an important issue.”