The use of human bodies without their permission is an age-old problem that continues today. History is replete with incidents of untold cruelty and injustice against fellow humans. An example of this is the Tuskegee experiment which ran from 1932 to 1972 in the United States.
Approximately 400 African Americans with syphilis were divided into two groups. One group was given treatment, and another was denied treatment to study the effect of syphilis treatment on people. Around 100 people died, and many more were affected by this inhumane experiment.
During World War 2, the Nazis performed many cruel experiments, including Josef Mengele’s twin experiments, head injury experiments, freezing experiments, and malaria experiments. The oft-cited minimum of 15,754 victims in Nazi Germany is a gross underestimation of the scale of this cruelty.
In the 20th century, pharmaceutical companies performed numerous experiments in Africa, exploiting the often weak regulatory environment. A recent case is the AZT study, between 1994 and 1998, that involved 17,000 Zimbabwean women.
In the 1980s, during apartheid, South Africa developed and used biological weapons that included botulism, cholera, and anthrax for crowd control.
The need to protect people of all countries from unethical medical experiments makes the story of Henrietta Lacks a compelling lesson. I have introduced a monthly reading club to promote the reading culture at the University of Johannesburg, and this month we are reading the book, The Immortal Life of Henrietta Lacks by Rebecca Skloot.
Intriguingly, over the last 70 years, research for the first polio vaccine, in-vitro fertilisation, cancer, and the effects of Covid-19 has been done using the HeLa cells. The HeLa cells are named by using the first two letters of the name and surname of Henrietta Lacks. The total weight of HeLa cells produced by 2010 was estimated to be more than 50 million metric tons.
This is incredible given the fact that they all came from a single sample of cancerous cervical cells of an African American woman in 1951, Henrietta Lacks. Written by science journalist Rebecca Skloot, The Immortal Life of Henrietta Lacks traces the story of the HeLa cells, the woman behind them and the impact the cells have had on science and Henrietta’s family.
In 1951, at just 31, Henrietta was diagnosed with cervical cancer. In the 1950s, black Americans were still fighting to gain equal rights under the law in the US, and Henrietta was from a family of poor black tobacco farmers.
In 1951, as she felt a “knot” on her cervix, many hospitals in the US practiced segregation, and she ended up at Johns Hopkins University Hospital in Baltimore, Maryland. She was quickly diagnosed with cervical cancer and underwent aggressive treatment. While she was sedated on the operating table, her first procedure, two tissue samples were obtained from her, one taken from her tumour and one from her normal cervical tissue. This was done without her permission.
These tissue samples were carefully placed in a glass dish and transferred to the head of tissue culture research, George Gey. Gey had asked for tissue samples from all cervical cancer patients to develop a culture of both healthy and cancerous surgical cell tissue.
At the time, no human cells had ever survived long in a laboratory, but Henrietta’s cancer cells, which Gey labelled as HeLa, miraculously survived. HeLa were the first, and, for many years, the only human cell line able to reproduce indefinitely. Henrietta succumbed to her cancer, but her cells lived on. Though this was a substantial scientific breakthrough, in the years since Henrietta’s death, there have been glaring and often unanswered questions about the ethics behind this feat.
Neither Henrietta nor her family gave her physicians permission to harvest her cells — which at the time was not required. In fact, it was only 20 years after her death that the Lacks family even found out about the cells as Henrietta’s name had long been kept a secret. As her son, Lawrence remarked to Skloot, “She’s the most important person in the world and her family is living in poverty. If our mother is so important to science, why can’t we get health insurance?”
Henrietta’s story goes beyond her “immortal cells” — it is one of a young mother, a failing system and one that highlights the racial inequities that are embedded in the US research and healthcare systems. Dr Howard Jones, who treated Henrietta, would remark years later that clinically, Mrs Lacks did not do well and paraphrasing Charles Dickens’s work in A Tale of Two Cities, observed that the whole situation was extremely advantageous for science because her unusual tumour gave the world the HeLa cell line while she left her family behind in poverty. More than 100 years on from Henrietta’s birth, the ethical considerations for scientific discovery remain at the fore of the conversation around advancement.
Visit Daily Maverick’s home page for more news, analysis and investigations
Henrietta Lacks is now, of course, recognised by the World Health Organization (WHO), and has an annual conference named after her, while Johns Hopkins University has written extensively on how they could have acted more ethically and how to approach future breakthroughs.
However, the conversation still needs to go beyond this. As we dive further into the Fourth Industrial Revolution (4IR), we must emphasise ethical developments. We continue to see more significant medical shifts driven by advancements in artificial intelligence (AI).
For example, in 2018, a custom-built AI machine designed to diagnose brain tumours and predict hematoma expansion scored 2-0 against its human competitors, comprising 15 senior doctors from China’s premier hospitals.
In 2019, University of California Berkeley and University of California San Francisco researchers announced that they had developed an algorithm that can detect brain haemorrhages with accuracy better than two out of four radiologists in a test.
This year, Boston University School of Medicine researchers found that AI may be as accurate as clinicians in diagnosing dementia. In fact, the AI model surpassed clinicians in differentiating the type of dementia in patients who had been diagnosed.
As these advancements gain traction, an ethical approach must be a key driver. Alongside these developments, we have also seen discrimination play out in healthcare. In 2019, a study found that risk-prediction algorithms led to black patients receiving less quality care than their counterparts in other race groups.
As David Leslie appropriately asked in a research paper last year, “Does ‘AI’ stand for augmenting inequality?” A consideration of the rights, needs, goals, and behaviours of all people must be integral to the development process. We must heed the lessons from Henrietta’s story. As Naik and co-researchers wrote in a journal article in the earlier part of 2022, to fully achieve the potential of AI in healthcare, four major ethical issues must be addressed: informed consent to use data, safety and transparency, algorithmic fairness and biases, and data privacy. As the authors write, “The aim is to help policymakers ensure that the morally demanding situations raised by enforcing AI in healthcare settings are tackled proactively.”
Henrietta’s story represents a scientific triumph, but it came at a high cost to the Lacks family. As we move forward at seemingly the speed of light, we must do so ethically. As Deborah, Henrietta’s daughter reminds us, the worry is not the use of the cells but how doctors and researchers approached this process. As she says to Skloot, “I don’t want to be immortal if it means living forever, cause then everybody else just die and get old in front of you… But maybe I’ll come back as some HeLa cells like my mother, that way we can do good together out there in the world.”
In South Africa, what is to be done? First, we need to have scientifically literate lawmakers to create laws that will protect our people. Such lawmakers must understand issues as critical as cell lines and their economy. Second, we must embed a robust ethical culture into our education system, especially when dealing with people’s issues. Such an education system must incorporate the study of the relationship between ethics and profits. Third, we need to strengthen regulatory institutions to protect our people. DM