|Henrietta Lacks - 1943|
Understandably, the family, who had not given permission to even map the cells, was incensed. The National Institute of Health interceded and arrived at a protocol as to how the cells could be used in research and by whom.
I was reminded of a Post I wrote a year and a half ago after reading a book authored by Rebecca Scloot on the cells. So here it is again. I hope you enjoy it.
I have scrupulously avoided making a post seem like a book review, although I have recommended books in the past. But I am currently engaged, and that is an appropriate word, in a book titled “The Immortal World of Henrietta Lacks” by Rebecca Skloot. This first novel by a very prolific author was a New York Times best seller in 2010.
It tells the story of a poor black woman who died of aggressive cervical adenoma-cancer in 1951: a growth so unusual that her treating physician, George Otto Gey of Johns Hopkins Medical Center, cultured biopsy sample both before her death and at her biopsy. The humanity of the story centers on the lives of her surviving siblings and their progeny, all of whom were poor, in poor health, and unaware for twenty-five years that her cells were changing medical science and making some people a lot of money.
But the greater story in my mind is the evolution of cellular research and the doctrine of Informed Consent.
For more than twenty years I have been closely involved in a course designed to establish standard evaluation of dental care, under the umbrella of the California Association of Dental Plans. In that course we have carefully constructed a definition of Informed Consent as coming from Tort Law and Battery. We teach that it has four elements: Risk Assessment, Benefits, Alternatives and Financial choices, to which we have cleverly assigned the acronym, BARF. While we do teach that California in a court case in the early 1970s defined the concept, I was unaware until I read Henrietta Lacks, that the first U.S. court case to mention the word Informed Consent was in 1957, when Dr. Paul G. Gebhard was found guilty of malpractice and had his license suspended because he performed an hysterectomy after discovering a cancerous tumor while the patient was under anesthesia.
In fact, the concept had very late origins worldwide, coming only after the Nuremburg Medical trials in 1947.
Ms. Skoot provides meaningful discussion also of the Privacy issues surrounding medical records and treatment. I had been very aware of the restrictions about medical privacy from the establishment of the Healthcare Portability and accountability Act, and work within those restrictions on a daily basis in my work. But the nuances of balancing the value of medical research against concerns for patient care were never as clear as this book paints it.
To follow the advancement of cellular research and how much it was and is dependent on the cells from Henrietta Lacks, named for the first two letters of her first and last name, HeLa was absolute riveting: not only to me, but to my wife and her non-medical book discussion group. The virulence of the cells in the tumor Dr. Gey biopsied was responsible for those cells and their dividing successors to develop freezing of cells with stasis, shipping of cells throughout the world, in vitro fertilization, testing the effects of space on cells, and recombination, identification of chromosomes and ultimately defining the human genome, with development of the Polio vaccine, with meaningful studies of the effects of atomic radiation contamination, and even current and future treatment of AIDS.
I am currently working on a position paper for a dental group that requires analysis of papers written on a subject. In dentistry, and to a lesser degree in medicine, valid long-term double-blind studies with large populations are rare. Part of the reason for that, other than expense, is that if patients in the study are made aware of the risks and benefits, many would opt out of the study and few would voluntarily agree to placebo treatment. So, in order to proceed with those kinds of studies, patients are given very broad-based information on which to make a decision.
In some cases this means that “experimental” treatment, which most terminal cancer patients accept, may actually aggravate a condition rather than cure it. This was certainly true of Henrietta, who was treated painfully with radiation, the treatment of choice in 1950.
It was also true of my niece who recently died of recurring breast cancer, slowly and painfully, while in experimental treatment.
The book brings more questions than answers to the issue, the family did not suddenly become wealthy or healthy, but it is certainly worth the read.
In my next post I will suggest some ideas to revise the tax code, should Congress get around to addressing this issue.