On Henrietta Lacks' Cells

Henrietta Lacks (1920–1951)

HeLa cells, derived from a tumor from a woman named Henriettta Lacks, were the first human cells to survive in culture. They became an intensely and widely studied cell line in the biological and biomedical sciences. Many important discoveries in human cell biology were made with this cell line. The case of Henrietta Lacks, who did not know her cells were cultured and propagated (neither did her family until later; this is something that now would be unacceptable), was resolved in unprecedented ways by NIH to the family's satisfaction (Nature article).

The case raises bioethical questions. What rights does a patient and their family have over the use of a cell line derived from a patients' tissue? Does the patient or his/her family have rights to some of the profits made from commercialization of discoveries made with these cells? Most importantly, what privacy rights does the family have over DNA sequence information derived from the cells' genome?

The solution going forward seems obvious. Consent and legally backed guarantees of anonymity and privacy with regards to genomic data (so nobody can trace the cells to a specific individual, unless that individual wishes it). That genomic data could be misused is a legitimate fear; for instance, if a genetic predisposition for a certain disease is made public this could be used, without proper laws and safeguards, to refuse health benefits to a person, etc. Consent, anonymity and legal safeguards are the only solution. In terms of the issue of whether a person would be entitled to profits gained from use of his/her cells: a resounding no. It would be ridiculous to attribute a discovery to the use of a cell line. The discovery was not the cell line but what was done with it, and any patents stemming from it would include many elements that are independent of that cell line in most cases. Moreover, the discovery that led to a patent would be the work of researchers and not the patient. So it would be not make any sense to award any part of the profits to the cell donor.