Cell culture.

A New Theory for Gene Ownership

By James Toomey

The story of Henrietta Lacks is surely among the most famous in the history of bioethics, and its facts are well-known. Ms. Lacks sought treatment for cervical cancer. After conducting a biopsy on her tumor, her doctors learned that her cancer cells reproduced uniquely effectively. Without her knowledge or consent, her doctors derived from the cells the HeLa cell line — the world’s first immortal human cell line, worth billions and a driver of the biotechnology revolution. Lacks died in poverty.

No doubt her doctors’ behavior was not consistent with today’s standards of informed consent. But another question has remained more persistently challenging — did the doctors steal something from Lacks? Did she own the cells of her tumor? Or, perhaps more precisely, because few argue that HeLa is really the same thing as Lacks’s tumor cells, did she own the genetic information contained in her tumor?

In a new paper, Property’s Boundaries (forthcoming in the Virginia Law Review, March 2023), I develop a theory of what can and cannot be owned to answer these kinds of questions — pervasive in bioethics, from debates about ownership of organs to embryos. My conclusion, in short, is that because the essence of the idea of ownership is a relationship of absolute control, anything that can be the subject of human control can, in principle, be owned. But that which we cannot control we cannot own. From this perspective, Henrietta Lacks owned the cells of her tumor, and the tumor itself. But the genetic information within them — facts about the universe subject to no human control — simply cannot be owned, by her or anyone else.

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