Some may be heralding the National Institutes of Health’s agreement with Henrietta Lacks’ family as a historic breakthrough for patient consent regarding scientific research, but troubling questions linger.
Ever since Rebecca Skloot published her critically-acclaimed bestseller The Immortal Life of Henrietta Lacks in 2010, Lacks’ story has been at the forefront of the medical community, especially as it relates to ethical questions.
Lacks, a descendant of slaves, was born in Roanoke, Virginia on August 1, 1920 as Loretta Pleasant but, after her mother’s death in childbirth, ended up living with her grandfather in Clover, Virginia in a home that had once been a part of the slave quarters of the plantation of her slave-holding ancestors. As a teenager, Lacks gave birth to a child fathered by her first cousin David “Day” Lacks, who became her husband in 1941. Together, they relocated from a tobacco farm to Baltimore County, Maryland where David Lacks began working for a steel mill.
In all, the couple had five children, one of whom was mentally ill, institutionalized and later died. During the birth of the fifth child in 1950 at John Hopkins Hospital, which treated black people, it was discovered that Lacks had cervical cancer. Although diagnosed and treated by John Hopkins, Lacks died in 1951 but, amazingly, her cells lived on, without her consent, literally helping to save the lives of many others. Lacks’ cells, known as HeLa cells, were unusual because hers were the first ones found to grow outside the body and not die within days as others had. In fact, they were able to reproduce an entire generation every 24 hours.
Because of this phenomenon, they became essential to modern scientific research around the globe, playing a vital role in developing the polio vaccine, cloning, gene mapping, in vitro fertilization and much, much more.
“So widespread was the subsequent distribution of HeLa cells over the years that 76,000 research articles have been written that cite use of the cells in one form or another,” writes David Kroll in his Forbes article, “Ethical Justice, But No Financial Rewards, For The Henrietta Lacks Family.”
Yet Lacks’ children, three surviving sons and daughter at the time, lived rather modestly in many instances, struggling to even afford their own medical care. And this was as their mother’s cells literally funded thousands and thousands of medical professionals. Actually it wasn’t until the family began receiving calls in the 1970s that they even became aware of Henrietta Lacks’ immortal cells.
Still it took Skloot’s hard-hitting book on Lacks for the medical community began to seriously look at its misbehavior regarding Lacks’ cells. Skloot, for her part, set up the Henrietta Lacks Foundation, which draws some funding from proceeds from her book and has assisted Lacks family members, as well as other victims of science such as descendants of those subjected to the Tuskegee Experiment, in medical need mostly. In response to Skloot’s book and accusations against it, John Hopkins issued a strong statement that “John Hopkins never patented HeLa cells, nor did it sell them commercially or benefit in a direct financial way.”
Others have also reported that the institution has a friendly relationship with the family that includes generous medical care.
At the time Henrietta Lacks’ cells were taken, patients had no say, especially if they were of color. There were no laws in place.
Read more of Mrs. Lack’s story on The Grio