Two articles (Newsweek and Fierce Biotech) describe the new lawsuit by the Henrietta Lacks Estate surrounding the HeLa cell line. The claim is "unjust enrichment," a difficult claim to win, but one that seems to fit this case, if any does. If you don't know this story, I recommend The Immortal Life of Henrietta Lacks, by Rebecca Skloot. It is the true story of an apparently wonderful woman, Ms. Lacks, who tragically died of cervical cancer at Johns Hopkins (now) Medical Center in 1951 at the age of 31. Human cell lines are notoriously hard to keep alive in a lab. Ms. Lacks' cancer cells were and are amazingly robust. Johns Hopkins saved some of those cells, identified them as extraordinary, used them in research, and later shared clones of the cells with others, who also used and shared them. Universities and companies still use that cell line today for research. There is no evidence that Johns Hopkins made a dime from the cells, but some biotech companies have used those cells in developing and testing new products. The plaintiff alleges systemic racism and many other things.
Ms. Lacks grew up in Virginia in the 1930s and 1940s, dying in Maryland in 1951. There is no question that she suffered systemic and personal racism. There also is little question that research scientists in the 1950s thought nothing of taking small tissue samples from the patient or from surgery detritus, especially in cases with negative outcomes, sometimes with and often without notice or permission. After all, surgeons usually threw that stuff away! Ms. Lacks happened to have the motherload of robust cells. What was wrong with appropriating a few (again in 1951)? Why should her family, now 70 years later, profit from that quirk of nature?
Imagine, instead, that Ms. Lacks had an untrained, but melodious and haunting singing voice. Also imagine that she was recorded singing standards of old popular tunes on her front porch, and those recordings became record albums that still sell today. Unless she contracted away her rights, copyright laws grant her a royalty from every sale and every public use for at least 75 years after her death. Now, how crazy does this lawsuit sound?
It will be an interesting case with many public soundbites. The angle is "racism." The real issue, in my humble opinion, is ownership of our own bodies and talents, and the ability of someone else to profit from them without consent. Issues of timeliness and reasonableness of expectation also may counter this. "Informed consent" was in its infancy in the mid-1950s. Researchers may have ignored Ms. Lacks' rights, but it was not obvious in 1951. Ms. Lacks was not the only person whose cells were used for commercial purposes. This may set a new legal standard for such cases and have broad impact. More likely, recognizing the potential public fallout, companies will line up to settle this quietly. We will follow this.