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Originally published in the May 21 edition of the Afro American Newspaper
On August 2, I will spend a few moments remembering Henrietta Lacks on what would have been her 90th birthday. Largely unknown to this day, she was a Black woman from our community who helped to change the world.
Born in rural Virginia, Henrietta and her husband, David, were building a life for themselves in the Baltimore County community of Turner Station when Henrietta succumbed to cancer in 1951, despite receiving the limited treatment available at that time.
Unknown to either Henrietta or her family, a sampling of Henrietta’s cancer cells were turned over to medical researchers. Therein, lies both the core of her contribution to the survival of millions and the source of heated controversies that rage to this day.
Ms. Rebecca Skloot described the continuing importance of Henrietta’s contribution in her April, 2000, article in The Johns Hopkins Magazine (and her more recent book, released this year, The Immortal Life of Henrietta Lacks).
The cancer cells from Henrietta’s dying body were unique. They were able to survive and replicate outside of her body - the first time that this ability had ever been observed.
As Ms. Skloot describes the event, “Henrietta Lacks' cells multiplied like nothing anyone had seen. They latched to the sides of test tubes, consumed the medium around them, and within days, the thin film of cells grew thicker and thicker.”
It was in this way that Henrietta Lacks, a Black woman of modest means, gained a measure of physical immortality.
The positive impact for humanity has been substantial. Her prolific cells were essential in the development of the polio vaccine - and, for the last six decades, the famous “HeLa” line of cells has been instrumental in moving critical medical research forward toward improved treatment of cancer, AIDS, the effects of radiation and many other threats to human life.
That is to say, the cell line has become famous, not the woman who provided it - a disparity that is not right.
The facts confirm that Henrietta Lacks was never asked for - nor gave - her informed consent for the use of her cells.
She has not received adequate public recognition for the gift that she bequeathed to humanity (although I understand that serious consideration is being given to a local initiative to set the record straight, an action with which I whole-heartedly agree).
Her family has received no financial compensation from the billion dollar research industry that her cells helped to create and sustain. In fact, many of her family members have been unable to afford the medical insurance that would give them better access to treatments that exist today because of Henrietta’s living legacy.
If all of this seems unfair to some, I would have to agree.
Still, most commentators acknowledge that no laws were broken at the time.
The laws today guaranteeing informed consent have become far more protective during the last six decades - in part because of Henrietta Lacks’ life story.
Where the issue of compensation (financial and otherwise) to donors for the benefits derived by others is concerned, however, decisions like those of the U.S. Supreme Court in Diamond v. Chakrabarty (1989) and the 1990 California Supreme Court case of More v. Regents offer little support.
Current law recognizes property rights (and patenting) with respect to organisms “that represent the product of human ingenuity,” not those (like Henrietta Lacks’) that are “naturally occurring.”
We all can appreciate the distinction. Human cell donations are critical to advancing our struggle against cancer, AIDS and the other diseases - research that must not be hindered.
This, however, should not be the end of our discussion where the ethics of medical research are concerned - and I believe that the President agrees.
“As our nation invests in science and innovation and pursues advances in biomedical research and health care,” he observed when he created his Commission for the Study of Bioethical Issues, “it’s imperative that we do so in a responsible manner.”
The fair compensation of cell donors and others who contribute to medical research should be at the top of the Commission’s agenda. Justice should also be part of Henrietta Lacks’ legacy.
Congressman Elijah E. Cummings represents Maryland’s Seventh Congressional District in the United States House of Representatives.
