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Wednesday, September 23, 2020

How a Black woman saved lives – without her consent or due acknowledgement

Cells derived from Henrietta Lacks made medical history, but her story says a lot about the history of race and ethics in medical research.

Written by Pooja Pillai , Edited by Explained Desk | New Delhi | Updated: July 28, 2020 7:41:24 am
Henrietta Lacks, HeLa cell line, medical ethics violations, ethics in medical research violation, Tuskegee Syphilis Study, J Marion Sims, express explained, indian express Henrietta Lacks historical marker in Clover, Virginia. (Photo: Wikimedia Commons)

In the coming week (on August 1) is the birth centenary of Henrietta Lacks, an African American woman who made one of the most significant contributions to modern medical science – without her knowledge or consent.

The story of Lacks and the HeLa cell line that was harvested from her – and which still forms the basis of a lot of medical research – is important for an understanding of the ethical issues in medical research on human subjects. This is especially so right now, given the urgency to develop an effective COVID-19 vaccine, which requires that it be tested on human cells.

Who was Henrietta Lacks?

Henrietta Lacks was an African American woman, who, according to The Immortal Life of Henrietta Lacks (2010, Crown) by Rebecca Skloot, grew up on a tobacco farm in rural Virginia. She was married to David Lacks and had five children.

On January 29, 1951, she visited the Johns Hopkins Hospital in Baltimore, Maryland, for the diagnosis and treatment of a lump in her abdomen. It turned out to be an aggressive form of cervical cancer. Lacks died at the age of 31 on October 4, 1951.

What is HeLa and what’s so special about it?

When Lacks was at Johns Hopkins, her tumour was biopsied and tissues from this were used for research by Dr George Otto Gey, the head of the Tissue Culture Laboratory at the hospital. The cells were found to be growing at a remarkable rate, doubling in count in 24 hours. Their astonishing growth rate made them ideal for mass replication for use in medical research.

Henrietta Lacks, HeLa cell line, medical ethics violations, ethics in medical research violation, Tuskegee Syphilis Study, J Marion Sims, express explained, indian express Multiphoton fluorescence image of HeLa cells stained with the actin binding toxin phalloidin (red), microtubules (cyan) and cell nuclei (blue). (Photo: Wikimedia Commons)

Prior to this, researchers had attempted to immortalise human cells in vitro, but the cells always eventually died. The HeLa cells – named after the donor – were the first ones to be successfully immortalised.

How have HeLa cells advanced medical science?

The HeLa cell line is one of the most important cell lines in the history of medical science and has been the foundation for some of the most significant advances in this field.

HeLa cells were the first human cells to be successfully cloned and were used by Jonas Salk to test the polio vaccine. Significantly, they helped in identifying the human papilloma virus (HPV) as being the main cause of many forms of cervical cancer – including the one that killed Lacks – and were instrumental in the development of the HPV vaccine, which won its creator, Harald zur Hausen, the Nobel Prize for Medicine in 2008.

They’ve been used widely in cancer research and were used to establish that human cells contain 23 pairs of chromosomes, not 24, as previously thought.

Also Read | In Covid year, why ‘unsung heroine of DNA’ Rosalind Franklin needs to be remembered

When was Lacks recognised as the donor of the HeLa cells?

Lacks was an unwitting donor; neither she, nor her family were aware that her cells had been extracted and were to be used for medical research. Lacks was a poor, uneducated Black woman and her consent was not considered necessary by the medical establishment at the time.

While thousands of studies and developments worth many billions of dollars happened due to the HeLa cells, Lacks herself was only acknowledged as their source in the 1970s when researchers sought blood samples from her family. Moreover, her descendants had no control over the cell line until 2013, when the National Institutes of Health arrived at an agreement with them, granting them a degree of control over how Lacks’ genetic material was to be used.

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Race and non-ethical medical research

In 1947, during the Nuremberg Trials, the Allied forces developed what came to be known as the Nuremberg Code, a set of 10 ethical principles for human experimentation. The code was created in response to the German experiments on human subjects during World War II and the first principle it enshrined was that voluntary consent was essential in human experimentation.

By the time Lacks’ cells were harvested and used without her consent, the code had been in existence for four years. Unfortunately, the violation of Lacks’ consent was only the latest chapter in a long history of medical research which has scorned ethics as far as non-white bodies are concerned.

Henrietta Lacks, HeLa cell line, medical ethics violations, ethics in medical research violation, Tuskegee Syphilis Study, J Marion Sims, express explained, indian express Sims performed his surgical experiments on Alabama slaves without their consent and without the benefit of anaesthesia. (Photo: Wikimedia Commons)

Take the case of J Marion Sims, the 19th century physician who is often called the “father of modern gynecology”. He pioneered the surgical treatment of the vesicovaginal fistula, a common complication of childbirth in which a tear develops between the bladder and vaginal wall, causing pain, infection and urine leakage. Sims performed his surgical experiments on Alabama slaves, without their consent and without the benefit of anaesthesia.

Also in Explained | Meet Dr Sarah Gilbert, one of the scientists leading the race to find a coronavirus vaccine

Or consider the infamous Tuskegee Syphilis Study, conducted by the US Public Health Service, from 1932 to 72, which examined how untreated syphilis progressed through African American men and how different it was from the way it affected white men.

Alabama’s Tuskegee Institute (now Tuskegee University) was recruited for the study and the subjects – 399 were infected patients and 201 uninfected control patients – were all poor sharecroppers. While treatment with arsenic, bismuth and mercury was initially part of the study, the subjects were later given no treatment at all. Even after penicillin began to be widely available for use in treatment of syphilis in the 1940s, it was withheld from the subjects of the Tuskegee study. More than 100 are believed to have died; the study finally ended only after public exposure in the Washington Star.

Unethical, non-consensual experiments on human subjects took place elsewhere too; in 2013, food historian Ian Mosby revealed highly unethical nutritional experiments conducted by the Canadian government on Aboriginal children in six residential schools between 1942 and 52.

As part of the study, malnourished children were denied adequate nutrition; parents were neither informed, nor was their consent sought.

In 2004, a senate inquiry into the experiences of Australian Aboriginal children forced into state care similarly revealed their use in medical experiments and trials, from the 1920s till as late as 1970.

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