Three cases appear in almost every bioethics course: the Tuskegee Syphilis Study, the death of Jesse Gelsinger, and the story of Henrietta Lacks. All three are taught as cautionary tales about what happens when research goes wrong. But only two of them have legal endings.
Tuskegee led to congressional hearings, the Belmont Report, and the regulatory framework that governs human subjects research today. It also resulted in a government apology and a $10 million settlement with the men who had been studied and their families. The Gelsinger case, the death of an 18-year-old in a gene therapy trial, brought program shutdowns, federal investigations, a settlement with his family, and lasting reforms to how conflicts of interest in research are disclosed and managed. Both stories are taught, correctly, as examples of how bioethics and law respond to harm.
The story of Henrietta Lacks has been taught the same way. It should not be.
What actually happened to Henrietta Lacks?
In 1951, Lacks was treated for cervical cancer at Johns Hopkins. Cells from her tumor were taken without her knowledge or consent and became the HeLa cell line, now one of the most widely used tools in biomedical research, cited in more than 100,000 scientific publications. But even though her name was always associated with the cells, her story was unknown to the public until Rebecca Skloot’s 2010 multi-prize winning book, The Immortal Life of Henrietta Lacks. The book,and subsequent movie, brought renewed scrutiny to how her cells had been obtained and used. For decades, her family sought recognition and restitution. Courts turned them away. Courts consistently held that patients do not retain property rights in excised tissue once it is removed from the body, leaving little room for legal claims based on ownership.
A serious wrong had occurred, the world had acknowledged it, and Johns Hopkins itself eventually said it could have done more, but there was no legal remedy. Case closed.
Except it was not. New lawyers and new strategies to recharacterize her claims have brought them back to life.
What is changing, and why does it matter?
In August 2023, Thermo Fisher Scientific settled a lawsuit brought by the Lacks estate. In February 2026, Novartis reached a similar settlement. Litigation is still active against other companies. A federal court has already allowed one of these claims to move forward.
The legal theory is not about ownership of cells. It is about unjust enrichment: the principle that one party should not retain profits derived from another’s materials without compensation. Think of it this way: if your neighbor builds a fence using lumber that was yours without asking, the law does not just say that was wrong. It asks whether they should have to pay you for the benefit they received. That is the question courts are now asking about companies that have made enormous profits from HeLa cells.
This is a modest but significant shift. These claims do not revisit the core holding that patients lack property rights in excised tissue, but instead operate alongside it. Courts are not saying Lacks or her family ever owned the cells. But they are saying that profiting from them without compensation might be unfair in a way the law can and should address. That is meaningfully different from where things stood even five years ago.
So what should we be teaching?
Bioethics courses should absolutely continue to teach the Lacks case as a story about consent, exploitation, and race. That history is essential and it has not changed. But they should stop teaching it as though it is over. Casebooks and syllabi that present Lacks as a closed episode obscure an active and evolving area of law.
The Lacks case raises questions that remain genuinely open. When biological materials taken from a patient decades ago continue to generate profit today, what, if anything, do the companies using them owe? Should we judge those obligations by the standards of 1951, or by what we now expect of institutions? Is acknowledging a wrong enough if the benefits from that wrong are still flowing to someone else?
These are not hypotheticals. They are being argued in federal court right now. Students who learn the Lacks case as a closed chapter are being deprived of the most important part of the story.
Tuskegee and Gelsinger teach students what it looks like when institutions are held accountable. The Lacks case teaches something harder: that accountability is not inevitable, that it can take generations, and that the people most affected sometimes have to keep fighting long after the world has decided the story is done.
The facts of the Lacks case are singular, but the underlying issue is not. In Moore v. Regents of the University of California, a 1990 California Supreme Court case, John Moore sued after learning that his physicians had patented a cell line developed from his spleen, removed during cancer treatment, without his knowledge. He lost. The California Supreme Court held that patients do not retain property rights in excised tissue, emphasizing concerns that recognizing such rights could interfere with research by restricting access to biological materials. That ruling became the legal foundation that shut down the Lacks family’s property claims for decades. What has changed is not that courts are overturning Moore. They are not. What is changing is that unjust enrichment offers a different path, one that asks not who owns the cells but whether it is fair to keep all the profits from them.
That shift raises its own questions worth teaching. If companies face legal risk whenever they build products from tissue with a traceable source, will they become more cautious about using such materials at all? Will researchers stop sharing cell lines freely? Will the next HeLa cell line never be developed because no one wants the liability? These are not hypothetical concerns, and they do not have easy answers. They are exactly the kind of questions bioethics should be asking.
Henrietta Lacks died in 1951. Her cells remain in laboratories around the world. The companies that profit from them remain in business. Her family remains in court.
This is not a closed case. It is an ongoing one. Bioethics should teach it that way.
Jennifer S. Bard, JD, MPH, PhD, (@profbardlaw.bsky.social) is a professor of law at the University of Cincinnati College of Law and a professor of medicine, department of internal medicine, at the University of Cincinnati College of Medicine.