Henrietta Lack’s Legacy: Where is the integrity in this?

By Dr. Caroline Crocker

HeLa cells–I worked with them while a student at Warwick University and while engaging in multiple sclerosis research at Oxford University. We had them in the freezer at the Uniformed Services University in Bethesda, MD, they have been sent into outer space, been infected with human viruses and bacteria, and in fact have probably done more for medical research than any other cell line known to man. If piled up, it has been estimated that they would weigh 50 million metric tons!

In the book, The Immortal Life of Henrietta Lacks, author Rebecca Skloot describes how 31-year-old African American mother of four Henrietta Lacks died of cervical cancer in 1951, but her cancer cells are still doing well. Doctors from Johns Hopkins obtained her tumor cells, grew them in the lab, and they went on to be used to transform medicine. But her children lived below the poverty line and never received a penny. In fact, they were even recruited 25 years later (1976) so that researchers could learn more about the cell line, but not informed of the reason for the blood tests. Amazingly enough, some of her descendants do not have medical insurance and still find it difficult to pay for the medicines their ancestor’s cells helped to develop.

Of course, ethical standards have changed now–patients are guaranteed privacy, consent before treatment, and a limited right to know. But, how a person and their derivative cells and body parts are or should be related remains an important bioethical question. One might even say it is a matter of scientific integrity.