Who was she?
Henrietta Lacks was a poor, black Tobacco farmer from Southern Virginia. When she was 30 years old, she was diagnosed with cervical cancer. She went to John’s Hopkins hospital, which was the only place at the time which would treat black patients. She is also known as the mother of modern medicine, as her cells have been used to revolutionise many aspects of medical and pharmacological care.
What did scientists do?
Before treating her, her doctor obtained and kept a small piece of her tumour from her tissue biopsy, without telling her, or gaining any formal consent. He sent this to Dr Gey, head of tissue culture research at Hopkins.
It should be said that during this time, it was not uncommon for doctors to conduct research on patients without their knowledge and consent, and no laws were broken as protections that now exist for patients today, did not exist back then. But, a patient’s privacy and what we now know as informed consent were clearly violated,1 as well as a doctor’s ethical and moral responsibilities to their patient.
Scientists around the world were trying to grow human cells outside of the body for years, but were unsuccessful, until Dr Gey realised Henrietta’s cells did not die.
The cells doubled every 24 hours, and soon he sent these to other scientists, who would then grow them in their labs and send them on to their friends. In this way, her cells were circulated around the world. Facilities were created to produce her cells on a mass-level, and they grew within great, industrial vats. Her cells were grown to about 6 trillion a week, and were still spread around the world to different laboratories, at the hands of different scientists. All of this was done without her awareness, or consent.
During this time, her tumour grew to invade almost every single organ in her body. She died after her 31st birthday, and even after her death, her living cells were still being harvested from the tumour that led to her death.
They named them ‘HeLa’, after her, but kept her identity secret, using a made up name, Helen Lane. After some years, someone realised there was no Helen Lane, and the scientists came out with her true identity when confronted about this. From the start, they had no intention to share any information about what they were doing, with her or her family.
Her family
Henrietta was survived by her husband and 5 children. They lived in severe poverty. Decades later, they still did not know about the contributions to science and medicine Henrietta was making. In the 1970s, 2 decades after her cells were first taken, a man named Victor McKusick, also known as the grandfather of the Human Genome Project, wanted to track down Henrietta’s children. He wanted to obtain their cells and study their DNA, to learn more about HeLa cells.
Henrietta’s husband had a 4th grade education, and he did not even know what a cell was. So, it is understandable that he did not fully grasp what the researchers were telling him and his family when talking about HeLa cells, and its grand contributions in the fields of science and medicine. At this time, Henrietta’s daughter, Deborah, was turning 30. She knew her mother died around the same age, and she was scared she would also die from the same thing that killed her mother. She asked the scientists whether, from checking these “bits” of her mother, whether they would be able to tell her her “favourite colour, whether she liked to dance, and if she liked to breastfeed me”2. She also believed her mother would be experiencing some sort of pain in the afterlife, by being injected with chemicals, and being exported into space, as well as feeling the effects of polio, as her cells contributed to the development of the polio vaccine.
At no moment were Henrietta’s family explained properly, in layman terms, what was happening to them or their mother’s cells. One scientist gave Deborah a medical school genetics textbook after being questioned by her, and told her that it would explain everything she needed to know about her mother. Of course, it did not. Her father thought the scientists were testing them for cancer.
Even at this point, there is a complete lack of effective communication. As her family did not fully understand what was happening to theirs and their mother’s cells, you could say that they were not able to fully consent to these procedures being done to them. Imagine being exposed to continuous procedures, for years, and not fully grasping what is going on. And in the background, thousands of people and companies profiting off the backs of your genes.
This went on for years, Henrietta’s family’s cells and DNA being harvested. Their cells were soon sent around the world to different laboratories and scientists too, and they did not know what was happening to them, or the amazing contributions (see below) that were happening because of their genetics.
Her contributions to science and medicine
Her cells were used to study HPV (human pappilomavirus) and find out how it can cause cervical cancer. Then used in development of the HPV vaccine
Used to help develop the polio vaccine
Sent with the first space missions into space, to see how human cells would react to radiation and how space travel could later impact astronauts
Used to create some of our most important cancer medications, for example tamoxifen for breast cancer and drugs for treatment of specific ovarian, lung and cervical cancer
Used for development and treatment benefits of a drug called Hydroxyurea, which is used for specific blood cancers and sickle cells anaemia. This drug also prevents red blood cells from being misshapen, due to the sickle cell genetic mutation
Used to see how salmonella infects the body and causes infection
How HIV and AIDS progress
How X-rays negatively affect human health
Being used to research thalidomide, and repurposing it from causing birth defect when used as an anti-morning sickness, instead to fight cancers like multiple myeloma
Helping form modern IVF treatments
They were the first ever cloned, and one of the first genes ever mapped
AND MANY MORE!!3
Without Henrietta’s cells, we would not have many of the treatments and medications we have today.
Profiting
Her sons figured out that people were buying and selling these cells. In addition to being one of the most significants contributions to Medicine, her HeLa cells were being used to launch a multi-billion dollar industry. How? Multiple successful present day biotech companies that now supply various genes and cells, and patented cells, began as the small companies and laboratories which sold HeLa cells. Additionally, these inordinately profiting companies were patenting cells that did not, and do not, belong to them in the first place.
Her family questioned that if people were selling and buying their genetics and tissues grown from their mother’s cells, where was the money that they were owed? Additionally, as aforementioned, their family was living in poverty for a long time, and when Rebecca Skloot, writer of The immortal life of Henrietta Lacks, investigated this story and found the family, she found that Henrietta’s husband had prostate cancer, one of her son’s had a bad heart, Deborah had arthritis, osteoporosis, nerve deafness, anxiety and depression. Her family, rightly, queried that if their mother’s cells were so important to medicine, why are they not able to access medical care and go to the doctor? Was it not modern medicine that HeLa cells helped to create? They could not afford medical insurance, or had any money for treatment for their plethora of diseases. And yet still, companies were making millions and billions from their mother’s, and their, cells. Yet still they did not receive any compensation from these researchers and companies who profited off of them.
Henrietta’s case opened up a pandora’s box of medical issues, including patient’s rights and privacy, their right to know and informed consent, tissue collection, handling and harvesting, ethical issues surrounding tissue used for medical and scientific research, as well as many other things. It has revolutionised medical ethics with which we practice today, and at the forefront of our practice is the treatment and wellbeing of our patients. Dr Gey was focussed not on his patients rights and privacy, but on advancing biomedicine and the goal of curing cancer first and foremost.
It has opened up themes of consent, whereby researchers and doctors need to obtain consent for taking tissues, and if they intend to use it for future research, this must also be outlined.
In March 2013, HeLa’s genetic code was sequenced, and soon after, a group of German scientists posted her genetic code on the internet. Again, the Lacks family’s privacy was ignored, and no consent obtained from her family to do this. They felt rights violated yet again.
This sparked an agreement between the US National Institutes of Health and her family. Now, 2 of her great-grandchildren are on a board which oversees HeLa in research, and all federally-funded studies must be approved by them. In this way, the rights and responsibilities of these cells, have rightly been given to the people who own them.
If you would like to know more please read The Immortal Life of Henrietta Lacks by Rebecca Skloot.
Henrietta Lacks and The HeLa Cell: Rights of Patients and Responsibilities of Medical Researchers
Youtube - Introduction to Henrietta Lacks with author Rebecca Skloot
https://osp.od.nih.gov/scientific-sharing/hela-cells-timeline/
Picture - The Mother of Modern Medicine by Kadir Nelson, oil on linen, 2017.