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. Oprah Winfrey is even set to make a HBO film out of it.
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.”
According to the British newspaper The Telegraph’s 2010 article “The Immortal Life of Henrietta Lacks: a bittersweet legacy” by Liz Hunt, “In 2009, the U.S. Patent and Trademark Office had some 11,000 patents logged involving HeLa.”
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. Because of this reality, some have argued that the medical community has no legal responsibility to acknowledge or compensate her descendants. At the same time, the scientific world of medical research that exists today was also unheard of and, consequently, laws and practices have quickly evolved to address the changing landscape. One thing, however, has been slow to change.
While it is certainly great that, from now on, the NIH will “restrict the distribution and access to complete DNA sequences from Henrietta’s cancer cells to scientific researchers funded by U.S.-government grants” and such “requests will now be reviewed by a six-person panel that includes two Lacks family representatives,” plus “publications resulting from such work will now be accompanied by an acknowledgement of Henrietta Lacks as the source of the cells,” where is the green?
In light of the Lacks phenomenon, the 2012 Science Magazine article, “Paying Patients for Their Tissue: The Legacy of Henrietta Lacks” by Robert D. Truog, Aaron S. Kesselheim and Steven Joffe, tackled the very issue of patient compensation in this new arena.
“Although it is difﬁcult to precisely quantify the total revenue generated from the HeLa line, it is not unreasonable to assume that the line has contributed to hundreds of millions of dollars in downstream revenue. Hundreds of patents contain the word “hela” in their claims, and genetically modiﬁed versions of the line currently sell for as much as $10,000,” it notes.
But yet the aforementioned revelation did not change the authors’ conclusion. “Although one can point to the many injustices Lacks endured as a poor woman without access to needed medical care, the use of her residual clinical tissue, involving no additional risk or burden to her, does not demand any form of compensation.” In fact, they also cite the California Supreme Court’s 1990 ruling in Moore v. Regents of the University of California against such a practice. The Court deemed that doing so would “hinder research by restricting access to the necessary raw materials” as well as “destroy the economic incentive to conduct important medical research.”
While it is indeed noble to serve a higher scientific good with no concern for one’s self, it is quite disconcerting that, time and time again, this decision is often made for black people. Given this country’s history of general medical malpractice against African-Americans, more people than Henrietta Lacks and her descendants deserve compensation.
More than sixty years after her death, other poor black women still lack access to quality medical care. Yes, there’s no denying that Henrietta Lacks’s HeLa cells have served a greater good. Unfortunately that greater good has failed to trickle down. Of the researchers living off research grants and others holding patents, it is doubtful that a significant number are of African descent.
But, once again, the mainstream media promotes that black people should be content with symbolism over real justice and financial compensation. Where is the ethics in that?
Follow Ronda Racha Penrice on Twitter at @RondaRacha.