The Unsettled Debate at the Heart of the Henrietta Lacks Case

Do we own our bodies? To an ordinary person, the answer is obviously yes. To a lawyer, it’s not at all clear. That discrepancy needs to be resolved.

The issue arose in the recently settled lawsuit brought by the family of Henrietta Lacks, the woman whose “immortal” cells were used without her knowledge or consent in research that led to the development of treatments for diseases including cancer, Parkinson’s and the flu.

Lacks, a Black mother of five, was dying of cervical cancer in 1951 when doctors at Johns Hopkins Hospital in Baltimore biopsied tissues from her cervix. The family’s lawsuit claimed the tissues “were not taken for purposes of medical treatment.” A peer-reviewed article in 2019 said some of the tissues were sent to a pathology lab for diagnostic evaluation, while others were sent out to a research lab. Whatever the case, cells from the research sample were later found to be highly valuable because they were the first that could divide indefinitely in a laboratory. The lawsuit accused Thermo Fisher Scientific of selling the cells and trying to secure intellectual property rights on the products the cells had helped develop without compensating the family or seeking their permission or approval.

The lack of informed consent for research use that loomed large in the Lacks case is less of a live issue today because standards have changed: Consent forms generally require that ownership claims over excised tissues be waived, thus allowing for research use. And cells are “de-identified,” unlike Lacks’s cells, which are named HeLa to this day. What’s still debated is whether people have a legitimate ownership claim in the first place.

The assumption that Lacks owned her body and the bits carved out of it was very much the premise of the family’s lawsuit. “There is a widespread consensus today that the theft of Ms. Lacks’s cells was profoundly unethical and wrong,” it said. Also: “Thermo Fisher Scientific has known that HeLa cells were stolen from Ms. Lacks and chose to use her body for profit anyway.” (Emphases mine.)

Tellingly, though, the lawsuit didn’t allege theft or its civil-law cousin — “conversion,” in lawyers’ language. It alleged only unjust enrichment. That’s probably because under current law and precedent, proving that Thermo Fisher Scientific or Johns Hopkins took anything from Lacks illegally would have been difficult or impossible.

Property, I found out when I spoke with legal experts this week, is a fuzzier concept than one might think. Law students are taught that it can be likened to a bundle of sticks, with each stick representing a particular right. Take a house on a lot, for example. You own it, but not fully. The holder of the mortgage has a potential claim. Airplanes can fly overhead. There may be an easement for a sewer or gas line.

Property rights over a human body are even more constrained. One can’t mortgage oneself or leave oneself to one’s heirs, as with a house. One also may not legally sell oneself as a slave. A person can’t sell most of his body parts, “not even if he were to get 10,000 thalers for one finger,” as the philosopher Immanuel Kant once wrote. (Blood, sperm and eggs are among the exceptions.) Courts have found that people retain no ownership right to bits they have expelled or sloughed off — urine, dead skin, hair cuttings.

“People think that because they have autonomy over their physical body, that means they have a, quote, property interest in it. That is just bluntly wrong,” Jacob Sherkow, a professor at both the University of Illinois College of Law and the Carle Illinois College of Medicine, told me. When I told Sherkow that his statement didn’t accord with the popular understanding, he said, “The man on the street did not go to law school.”

Even if people did have a property right to their bodies, Sherkow said, that wouldn’t give them a property right to the genetic information in their cells. In economic rather than legal terms, he said, genetic information is a public good, meaning it can be used simultaneously by more than one person without conflict, and no one can block another’s use.

One step beyond claiming ownership of genetic information is claiming a stake in the value of research done using that genetic information. There’s no legal justification for that, Jorge Contreras, a professor at the University of Utah S.J. Quinney College of Law, told me. That would be like claiming profits from a discovery made using your laptop computer, he said.

“It’s a very bad idea to give people a proprietary interest in this kind of material because of the floodgates that it would open,” Contreras said. “It would be devastating for scientific research that benefits us all.”

Courts have leaned against the property argument. In 1990, the California Supreme Court ruled that people don’t have a right to a share of the profits from research performed on their bodily materials, a blow to the concept of bodily property rights. In 2013, the U.S. Supreme Court ruled that genes aren’t patentable because they are products of nature, but didn’t address the question of whether people owned their own genes.

Some legislatures have been more open to the notion. Five states — Alaska, Colorado, Florida, Georgia and Louisiana — have gone ahead and explicitly defined genetic information as personal property, according to the National Conference of State Legislatures. But Sherkow said it’s not clear if those laws will stand up if and when they are tested in court. (Oregon was the first state to enact such a law, but repealed it in 2001.)

To be sure, property law isn’t the only way to protect genetic information. There’s also contract law and privacy law. The National Conference of State Legislatures says that 16 states have genetic privacy laws that require informed consent for a third party to perform or require a genetic test or to obtain genetic information, and 26 states require written authorization or at least informed consent to disclose genetic information.

Still, no matter what judges and lawmakers say, the sense that people naturally own their bodies and bodily products runs strong, as the complaint by the family of Henrietta Lacks makes clear.

Some legal experts say they sympathize with the woman and man on the street. “It’s a bad thing for the law to be out of touch with popular beliefs in a dramatic situation,” Hank Greely, the director of the Center for Law and the Biosciences at Stanford Law School, told me. He added, “In the long run, it is good for the law to largely correspond with the public’s understandings of justice.”

Jessica Roberts, a professor at University of Houston Law Center who specializes in health law and ethics, is in a minority of experts in her field who say people should have property rights over both their bodily tissues and the genetic information in them. She said she doesn’t worry that those rights would inhibit legitimate medical research because they would be limited. What it would do, she said, is give people an opportunity to negotiate for a share of the profits from work done using their genetic material. Some might not even demand money, she said. “Some experts, because they adopt a primarily economic lens, tend to underestimate the human capacity for altruism,” she said.

Legislatures, particularly state legislatures, are the best forum for changing the status quo, both Greely and Roberts told me. Courts are constrained to follow legal precedent; legislatures aren’t.

The science of genetics is moving faster than the law. “We have already entered unknown territory,” Morten Ebbe Juul Nielsen, a philosophy professor at the University of Copenhagen, told me. “We don’t have any strong precedents that fit these cases very well.”

The Readers Write

An enormous salary for a star athlete is an asset to the industry because the salary itself creates its own appeal to fans and spectators. People want to watch the star not just for the wins and the beauty of the athleticism, but precisely because he is making phenomenal amounts of money.

Helen Sharpe
Halifax, Nova Scotia

I suspect that a (subconscious?) reason many people object to high salaries for star athletes is that a significant percentage of these athletes are people of color. Many others in our society earn what I would consider to be obscene salaries while contributing much less value, e.g., hedge fund managers, who are almost exclusively white.

Lizanne Reynolds
Aptos, Calif.

I am glad you ended the article with “And he [Szymanski] wouldn’t limit the high tax rates just to athletes, since people in other careers also earn scarcity rents.” It would be unfair to single out people with the “luck” of physical skills and not those born with other types of skills — intelligence, cunning, bombast, etc. — which, at times, reap excessive rewards (ill-gotten or otherwise).

Dave McNamara
Moorpark, Calif.

You wrote about encouraging savings with prizes. Don’t forget the very popular investment gambling option represented by actively managed mutual funds, the marketing for which does act as a saving incentive for some investors, it seems.

As a dyed-in-the-wool nongambler, I put my hard-earned retirement assets in index funds. I guess they’re still more of a gamble than U.S. bonds, but certainly far less than stock-picking by an active fund manager, or — even worse — an amateur like me.

Ted Baldwin
Jamestown, R.I.

Quote of the Day

“TARIFF, n. A scale of taxes on imports, designed to protect the domestic producer against the greed of his consumer.”

— Ambrose Bierce, “The Devil’s Dictionary” (1911)

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