As first reported by Digital Journal – shortly after the book debut, the full account of one of the most important developments in scientific medicine was finally completely revealed. In 1951 human cells taken from a cancer patient by the name of Henrietta Lacks became the first ever to be mass-produced, packaged and distributed for research and experimentation. While, over the past six decades, the “HeLa cells” have been a revolutionary help to science, literally the world-over, the breach of patient confidentiality and rights were overstepped. Last month, Oprah Winfrey starred in an HBO movie based upon Skloot’s book.
In her book, “The Immortal Life of Henrietta Lacks” Skloot details the life of the woman behind those multimillion dollar making cells. Important as her cells were to helping science advance, doctors took her cells without Henrietta’s permission. Her surviving family members knew nothing of the more than 60,000 scientific studies conducted with the help of her cells and countless other scientific endeavors. In the NY Times review of Skloot’s bestseller, the Lacks family was not informed of Henrietta’s cell contribution until 1973 – more than 20 years after initial samples and testing had begun.
The ‘HeLa cell’ perhaps has become the prophetic reality foretold in the 1931 science fiction novel “Brave New World” by Aldous Huxley. With the development of producing and then distributing offsprings of her cells, the ushering in of the biotech and genetic engineering industry took hold. And, like the chilling predictions Huxley envisioned, the over-stepping of boundaries and causal-like use of very delicate human material in the name of science raises ethical questions that will continue to echo further into our 21st Century.
What is most upsetting is the disregard for Henrietta’s privacy; and failure to disclose to her and her family what was happening and continues to this day. Medical advancements, countless studies and research are all due to her very existence as an unsuspecting, very vulnerable patient who was suffering and dying of cervical cancer.
Skloot in “The Immortal Life of Henrietta Lacks” provides a very thorough but haunting account of how a mother of five children, from the South with limited resources became the material from which most of the current advances in medicine evolved. Skloot noted that while the term ‘HeLa cells’ could be looked up, very little if any information could be found about Henrietta Lacks. She was the real life person behind those cells. Few if any really knew of her, until Skloot went on a quest.
“As I graduated from high school,” Skloot writes, “worked my way through college toward a biology degree, ‘HeLa cells’ were omnipresent. I heard about them in histology, neurology, pathology; I used them in experiments on how neighboring cells communicate… but no one mentioned Henrietta.”
Skloot noted that even in the 1990’s as the Internet blossomed, “I searched for information about her, but found only confused snippets.” Some web sites at the time listing her name as Helen Lane. Skloot became more determined to find out, going to even greater efforts to locate accurate and full information.
Finally, she was able to find the Lacks family. But Skloot had to win their trust and confidence. Ever since Henrietta’s children and relatives learned of what John Hopkins University labs had done with Henrietta’s cells, they became very guarded. While ‘HeLa cells’ spurred an on-going multibillion dollar industry, the struggling Lack Family got no compensation.
As ‘HeLa cells’ traveled the globe to laboratories and medical facilities for research and study — even going off into outer space, the Lack family benefited from none of it. Ironically, the very material that helped medicine to advance, the family of the woman who made that possible, languished. They suffered with medical conditions as the health care system in the U.S. became harder to reach (and continues to be broken).
Skloot’s book uncovers the discrimination that Henrietta faced as a person of color, especially at a time when hospitals and other public institutions and facilities were segregated. She questions whether Henrietta’s aggressive cancer would have been detected and treated earlier if Henrietta had been a white woman.
Race, ethnicity, social class and money are examined in Skloot’s search of who Henrietta was. Skloot reveals poignant recollections of not only Henrietta’s past but also of America’s history: the unpleasant facts about racism, bigotry and indifference towards working people, especially those struggling; and the question of not only medical ethics but also of justice come into full view.
America’s history of slavery is also traced within the life of Henrietta who died at just 31 years old in 1951. She was born in a small town in Virginia in a cabin that had once been slave quarters to the local plantation. Working all her life, Henrietta and her family had few amenities.
Even as Lacks along with many others, migrated from the South to cities like Baltimore, St. Louis and Chicago, the economic opportunities they gained would have restrictions placed upon them. Lacks and her family lived within such restrictions and worked hard to make a living to raise a family and be happy.
In its review, The Washington Post makes note of the punitive conditions Henrietta and many others of that pre-Civil Rights era lived under. It is clear such conditions contributed to her ill health and subsequent pre-mature death. Had she received better medical care, she would have lived a full and long life. Ironically, the discovery and treatment of Human Papillomavirous or HPV, the virus that causes cervical cancer, was made possible through the ‘HeLa’ cells.
The facts behind this true-life story is remarkable and haunting. But again it raises important questions about ethics, patients’ rights and which boundaries must be set and held in place as a safeguard. Who can really say today with certainty that such violations will not happen again?
“The Immortal Life of Henrietta Lacks” is an important book; one that medical students should read. Hopefully, at some point somewhere amid the current medical establishment’s halls of power and influence, Skloot’s book will be required reading in Medical Schools across the nation. For more information about “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. Visit her web site.
