The Cells That Outlived Their Donor and the Rights That Did Not

In February 1951 doctors at Johns Hopkins Hospital took a sample from the cervical tumour of Henrietta Lacks, a young Black woman from the Baltimore area. She died in October of that year. The tissue went to George Gey, who found that her cells, which he named HeLa, could be kept alive and dividing indefinitely. They became one of the most widely used human cell lines in science. No consent was sought, and in the 1950s no rule required it.

Her family learned about the cells only in 1973, when scientists asked them for blood samples. By then the cells had been bought, sold and used in research around the world. The law was slow to catch up. In Moore v Regents of the University of California, decided in 1990, the California Supreme Court held that a patient has no property right in cells removed from the body, though it ruled that a doctor must disclose any financial interest in research on them. The decision protected research and left open the question of what, if anything, the source of the cells is owed.

In 2013 the publication of the HeLa genome without the family's permission led to an agreement with the National Institutes of Health that gives the family a say over controlled access to the genomic data. In 2023 the family settled a lawsuit against a biotechnology company on terms that were not disclosed. Consent rules now govern research, but they look forward. They say little about cells collected before the rules existed, and the debate over such cells continues.