AFRICANGLOBE – In 2010, I first read about Henrietta Lacks whose story so amazed me that for the 26th Awards Brunch of the National Congress of Black Women, we honored her posthumously.
Her brother and granddaughter accepted the award and were delighted that we introduced her to so many who had not heard her story. Mere weeks before this award, I was reading Rebecca Skloot’s book, “The Immortal Life of Henrietta Lacks,’’ and I couldn’t put it down.
Without Ms. Lacks’ consent, she was the involuntary donor of cells from a cancerous tumor.
These cells were cultured and created an immortal cell line known as HeLa cells. Her family had no idea that her cells remained alive and were studied in numerous scientific laboratories.
Billions of Dollars
Years later, the family learned that her cells had spawned a line that had been used in scientific research. They also learned that billions of dollars had been generated as a result of that research. Just this spring, the family learned that her genome had been sequenced and made public.
Ms. Lacks resided with her family in Baltimore County, Maryland. In 1951, at Johns Hopkins Hospital, she was diagnosed with cervical cancer and a tumor that appeared unlike anything ever seen by the examining gynecologist.
Prior to treatment and without her knowledge, cells from the carcinoma were removed for research. At her second visit, another sample was taken from her body and saved. It’s from this sample that the HeLa cells came into being.
Although she received treatment, her condition worsened and she died.
It was discovered that HeLa cells did something never before seen in medical science – the cells could be kept alive and growing! Since her death, over 20 tons of her cells have been grown and used for “research into cancer, AIDS, the effects of radiation and toxic substances, gene mapping, and countless other scientific pursuits”.
Although the pendulum of justice is often long to reverse directions, it will. On Aug. 6, the National Institutes of Health announced an agreement with the Lacks Family. The Lacks’ genome data will only be made available for biomedical research to those who apply and are granted permission.
Two family members will sit on the NIH group responsible for approving applications. Any research group receiving approval must publish an acknowledgment to the family in their research publications.
Unfortunately, the agreement does not include any financial compensation for the family. The Lacks family hasn’t, and won’t, see any profits from the findings generated by HeLa cells. They have, however, earned a moral and ethical victory for a family long excluded from any acknowledgment in the genetic research their matriarch made possible.
Dr. E. Faye Williams is chair of the National Congress of Black Women, www.nationalcongressbw.org.