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Health

Explained: Henrietta Lacks' Cells Taken Without Consent Still Help Science

Henrietta's grandson Ron Lacks is suing pharmaceutical Thermo Fisher for mass producing her cells while the WHO plans to recognise and felicitate her contribution to science.

By - Shachi Sutaria | 14 Oct 2021 9:52 AM GMT

The World Health Organisation posthumously recognised and felicitated Henrietta Lacks, an African American woman whose cancerous cells were removed without her knowledge in 1951 and gave rise to HeLa 'immortal' cells which have been instrumental in several scientific breakthroughs

The WHO intends to correct this unethical incident of keeping Lacks as well as her family in the dark while removing her cells, 70 years after she died due to cancer on October 4,1951.  On October 13,2021 the WHO conducted a special award ceremony to recognise her legacy. Her cells were unwittingly taken when she was being treated for cervical cancer at Johns Hopkins Hospital. 

Used in close to 75,000 studies, over 5 crore metric tonnes of HeLa cells have been distributed till date. The Lacks family was unaware of Henrietta's cells being used till 1973.  

Hailing it as a marker to work on improving past scientific injustices, the WHO awarded Lacks' 87- year-old son Lawrence in the presence of Henrietta's great grand-daughter Victoria, at the WHO office in Geneva. The WHO believes that this award is a further step in bringing about equity in health and science. 

This award comes at a time when one of her other grandsons, Ron Lacks who runs the Henrietta Lacks Estate has sued pharmaceutical Thermo Fisher for profiteering from the mass distribution of cells and not giving any money to the estate. Lacks' lawsuit also claims that the cells can no longer be used without seeking prior permission from the family.

Although the family has been fighting since 1973 and the cells have been in circulation since her death in 1951, scientists who used the cells were also not aware about the background of the origin of the cells. In 2010, American science writer Rebecca Skloot published her book "The Immortal Life of Henrietta Lacks" that brought the spotlight on the unethical manner in which the cells were taken and the plight of the family. This book was later adapted to a feature film of the same name which released in 2017 and starred Oprah Winfrey as Deborah Lacks, Henrietta's youngest daughter. 

The movie highlighted that the Lacks family lived in poverty and were unaware about this medical contribution. It further highlighted their battle to receive recognition and being reimbursed for the same. 

Who Was Henrietta Lacks?

Born in 1920, Lacks, a tobacco farmer lived in Maryland, USA. She was married to a steel worker and was a mother of five children. In 1951, she had severe vaginal bleeding and was taken to Johns Hopkins Hospital. According to Nature magazine, the Baltimore hospital was one of the only hospitals that treated African-American individuals. 

The doctors found a large, malignant tumour in her cervix. Diagnosing her with cervical cancer, the oncologist started her on radium therapy. Inadvertently, the hospital took a few samples of her cancerous cells and gave it to a neighbouring lab without informing Lacks or her family. Ten months post treatment, Lacks died at the age of 31. 

How Are HeLa Cells Immortal? 

Dr. George Gey's tissue lab which collected the samples from Hopkins found that unlike other cancerous cells that achieved cell death after a few hours of being isolated, Henrietta's cells continued to replicate, reproduce, and double. 

The doubling time (time in which a cell completely reproduces) was close to 20-24 hours. What fascinated the pathologist was that the cells did not reach senescence (aging and cell death) and kept on replicating continuously. This unlimited cell division led to discovery of the first human cell line that could be called immortal. This abnormal replication and no cell death sets these cells apart from regular cancer cells. 

Scientists still do not know the real reason behind the cells duplicating and staying immortal. 

How Did The Lacks Family Learn About The Cells? 

Till 1973, the Lacks family was kept in the dark about the HeLa cells that were being used in large numbers across the world. 

The Johns Hopkins Hospital on a web article has stated that they could and should have done more to involve the family as this incident highlights the inequity prevalent in the health system. In 1973, a few researchers contacted the Lacks family to conduct a few genetic tests as the HeLa line had contaminated another cell line. Till then, the complete genome of the cells was still being understood. 

This was when the Lacks realised that Henrietta's cells were being used in research without their knowledge and that even Henrietta did not know about the same. This incident is one of the pioneer decisions that led to the National Institutes of Health director Francis Collins signaling that he wants the research community to consider changing the Common Rule- a set of policies that protect human participants in research funded by the US government. This revision would require consent to be obtained from anyone whose biological specimens are taken and if the samples are going to be used in research. Consent will even have to be obtained if the specimens are "deidentified" from the person they came from.

How Have The Cells Helped In Scientific Discoveries? 

HeLa's contributions to the world of research are unparallel. These cells were instrumental in polio eradication as they were used to grow large numbers of the polio virus which helped the scientists understand how the virus affects human cells and causes the disease. 

In 1956, the HeLa cells helped understand the effect of radiation on human cells- this was the foundation of understanding the effect of X-rays on human cell growth. In the same year, the cell lines were used to develop a cancer diagnosis method which is still used till date. 

Furthermore, the cell line was used to test treatment against blood cancer and sickle cell anaemia. Another noteworthy contribution of the cells is that they helped find that certain forms of Human Papilloma Virus cause cervical cancers and also helped slow down cancer growth. 

HIV, Tuberculosis and even COVID-19 were some of the other diseases that the HeLa cells helped understand on a molecular level so that scientists could invent treatments against the same.