Earlier this month, I read in a Wall Street Journal article that a research lab at UC San Diego and Abcam, a British biotech company, were contributing money to the Henrietta Lacks Foundation to support STEM higher education for descendants of Henrietta Lacks.
Henrietta Lacks was made famous posthumously by the book "The Immortal Life of Henrietta Lacks," a 2010 best-seller by Rebecca Skloot. I'm sure some of you reading this blog have read it, and some may have seen the 2017 movie. I became aware of the book in 2010 when I tuned in NPR and heard a narrator describe how cells taken from a woman's cervical malignancy were grown in a lab, the first time a scientist had successfully grown human cells in tissue culture indefinitely. I was immediately drawn to the story, having utilized tissue culture myself in experiments I ran in what I call "my previous life," when I was a biochemist (before I went to medical school and became a pathologist). I never used human cells in my research, but was quite familiar with HeLa cells, which were used in many other labs.
I had learned that HeLa cells were grown from the ovarian cancer of a middle-aged woman named Helen Lane. Listening to the narrative, I learned that the cells actually came from the cervical cancer of a thirty-year-old woman named Henrietta Lacks, who died less than a year after a sample of her cells was taken.
I became curious about the about the origin of the cell line, and since there was a book written about it, I thought the story might be interesting.
I read the book, and found the story of Henrietta Lacks and her descendants to be sad, yet unfortunately, not unique. Of more interest to me were descriptions of the history of tissue culture, where I recognized the names of some of the scientists mentioned. I would recommend the book to anyone interested in the subject matter, with a caveat to be wary of oversimplification of some aspects, probably due to the author's unfamiliarity with some facets of the discussion. The Immortal Life of Henrietta Lacks is not a suspenseful mystery, so my description below is not a spoiler.
Henrietta Lacks was a poor, uneducated black woman who suffered from more than her share of the usual economic and social inequities of the time. She had been diagnosed with neurosyphilis in the past but refused treatment. Two months before her cancer diagnosis, she visited a doctor, probably at Johns Hopkins (although it's not stated in the book), where "Tests showed areas of increased cellular activity in the cervix," according to Skloot. I cannot tell what test was done at the time. Perhaps a Pap smear, perhaps a Lugol's iodine stain. The author had the medical record, but her reporting is vague.
Ms. Lacks was referred to a specialist to rule out malignancy but failed to go. To her detriment, she probably had a general distrust of doctors, as did many in her ethnic group. After the birth of her fifth child, Ms. Lacks complained of discomfort and finally sought care at Johns Hopkins which, in addition to being a well-respected tertiary care medical center, was a charity hospital.
While Jim Crow was alive and well at Johns Hopkins at the time and Ms. Lacks was segregated in the colored area of the hospital, her treatment was state-of-the-art. She died less than a year later after suffering great pain, despite receiving pain medication at the end. This is a heart-rending story, not different from that of others with advanced cervical cancer at the time. What happened to Henrietta Lacks's cells removed during her treatment, and her family’s reaction, gives rise to the core of the book.
Upon admission to the hospital for treatment, Ms. Lacks signed a consent for surgery. During implantation of radium tubes in Ms. Lacks's cervix, the treating physician removed two pieces of tissue, one piece malignant, one benign. The specimens obtained at that time may not have been needed for Ms. Lacks's treatment, but the procedure wasn't harmful.
The specimens were given to a researcher at Johns Hopkins who had been procuring tissues obtained during surgery, hoping to grow human cells in tissue culture for research. Obtaining samples in this way was and is a common practice, generally using tissue that would be discarded otherwise. Permission to use such tissue is covered in the language of most surgery consent forms. Removal of additional tissue without the patient's permission, as may have happened in Ms. Lacks's case, would not be considered ethical currently. At the time, however, there were no regulations in place.
The Johns Hopkins researcher who received the tissue had tried to grow human cells many times. The cells obtained from Ms. Lacks were the first that continued to grow indefinitely. Additional tumor tissue was removed at autopsy (after a consent was signed) but wasn’t needed to establish the cell line, named HeLa. The cells were attributed to a fictional person named Helen Lane to protect the identity of Ms. Lacks, even though this was decades before HIPAA was implemented.
Unbeknownst to the Lacks family, the cells cultured from Ms. Lacks kept growing and dividing. The scientist who first grew them shared them with other labs in the hope of advancing scientific knowledge. He never sold the cells, and never made money from distributing them. The same was true of Johns Hopkins and other scientists who grew, used, and shared the cells.
HeLa cells were eventually used for the manufacture of the polio vaccine (which was never patented) and led to many significant investigations. A company, Microbiological Associates, and a non-profit agency that supplies labs with cell lines, the American Type Culture Collection (ATTC), began selling HeLa cells. The money ATTC collected for the cells covered the overhead cost of growing and mailing them. It is not stated in the book how much profit, if any, was made by Microbiological Associates.
At some time, members of the Lacks family became aware of the existence of HeLa cells. Skloot published parts of conversations she had with them. Unfortunately, she presents a rather unflattering picture of them. They come across as incapable of understanding what HeLa cells are, mad that the cells were attributed to Helen Lane instead of Henrietta Lacks (as if there had been a conspiracy to rob Ms. Lacks of credit due her), outraged that the cells were taken, and infuriated they hadn't gotten any money, being convinced others had profited wildly from the cells.
In truth, the success of HeLa cells depended upon the contributions of scientists who developed techniques to grow and ship the cells. Years later, when there was real money in biotech, large profits may have been made using HeLa cells in conjunction with information gleaned from many costly experiments. The author didn’t present evidence that large profits were made from HeLa cells themselves.
Due to contamination of other cell lines with HeLa cells in the 1970's, blood samples from Ms. Lacks's relatives were obtained to determine which lines were compromised. According to Skloot, the relatives didn’t know why their blood was taken then, although the researcher who spoke to them claimed she explained it to them and thought they understood. Skloot indicated it is unlikely they understood because they weren't capable of understanding much.
I'm sure each reader takes away something different from this book, but I believe the overall message promoted by the author is that the Lacks family has suffered from racism and profiteering in medicine. I don’t think that is an accurate interpretation of the events. I didn't see evidence of racism in the therapy Ms. Lacks received. There was no profiteering by the man who originally grew her cells. Others may have made money using her cells later, but it is unclear how much, and what per cent could be attributed to her cells vs scientific discoveries. Ms. Lacks's contribution was an unfortunate accident of nature coinciding with being at Johns Hopkins at the right time. (Many people, by comparison, make important contributions to society without renumeration. For instance, art dealers can make huge amounts of money from paintings made by people who made little money for themselves or their heirs.) Eventually, probably due to the book, the family has received recognition, and a foundation has been set up in Henrietta Lacks's name.
The book (but not the movie) discusses ethical issues that came up later, before today’s laws to protect patients from experimental treatments were instituted. An interesting ethical case discussed in the book involves the human cell line Mo (named for John Moore). John Moore was a white man whose spleen was removed at UCLA for treatment of leukemia in 1976. A researcher, Dr. David Golde, grew cells from his spleen and discovered they made a protein that could be used in research and treatment. Skloot inaccurately states Dr. Golde, an oncologist, removed the spleen, whereas of course another doctor, a surgeon, performed the splenectomy.
Dr. Golde regularly collected blood and other specimens from Mr. Moore (I'm not sure why, as his cells were already growing), leading the patient to think the painful procedures he routinely underwent were part of his treatment (they weren't). I remember learning about the case when I was a pathology resident at UCSF. By then, I knew that specimens removed during surgery were regularly routed to researchers with an interest in certain tumors or tissues. Again, the consent form allowed for this. Monetary returns were generally of no concern at the time, as there was little money in biotech.
My recollection of events differs somewhat from those described by Ms. Skloot, but not in a material way. Mr. Moore moved to Washington state, and decided he no longer wanted to fly to Los Angeles for testing. He asked Dr. Golde if someone local could take his samples. When Dr. Golde offered to pay his travel expenses and put him up at an upscale hotel, Mr. Moore became suspicious and discovered that Dr. Golde had patented his spleen cells and turned them into a very profitable enterprise. A suit and several appeals ensued. Ultimately, the court ruled in Dr. Golde's favor, and Mr. Moore wasn't compensated. He ultimately died in 2001 and, although not mentioned in the book, Dr. Golde committed suicide in 2004.
The case brings up a number of ethical issues. In my opinion, obtaining specimens from Mr. Moore, causing him pain but not benefitting him medically, was a giant breach. The matters of cell and gene patenting are messy, and have not yet been fully worked out. Technology outpaces legislation. At this time, most surgical consents include permission to use or discard tissue removed at the discretion of the institution. There is still no agreed-upon process for remuneration from profitable specimens. Don’t expect to make a lot of money from your appendix.