Updated: November 30, 2021 7:29:48 am
We celebrated her birth centenary on August 1, 2020. A few days later, the World Health Organisation (WHO) launched its global strategy to accelerate the elimination of cervical cancer. She was only 31 years old when she died of cervical cancer. Last month, on October 4 — her 70th death anniversary — a bronze statue of her was installed in University of Bristol, the WHO gave her a posthumous award and her family sued a multinational pharmaceutical giant, Thermo Fisher Scientific.
Who was she? Her name was Henrietta Lacks, a Black tobacco farmer who lived in the US. Most scientists know her by the name of her cells, HeLa. But, of course, she is “more than a cell,” as the inscription on her statue states.
HeLa cells have been critical for many biomedical breakthroughs. Jonas Salk used the cells to develop the polio vaccine, identify the human immunodeficiency virus (HIV), and develop the cervical cancer vaccine. HeLa cells have been used to understand how the SARS-CoV-2 coronavirus infects humans. This has helped in the Covid-19 vaccine discovery. HeLa cells were sent on space missions to understand biological impacts of environmental stress.
Attempts by researchers to grow human cells in a petri dish that would keep dividing for a long time were miserable failures. The cells of Henrietta Lacks — a 30-year old mother of five diagnosed with cervical cancer in 1951 — had a remarkable property. Her cells not only grew outside of her body, but also divided rapidly. The number of her cells nearly doubled every day. Cells that grew indefinitely outside of the human body — an “immortal” cell line — enabled scientists conduct experiments that would have been impossible on a living person. Lacks passed away 70 years ago. But over 50,000 metric tonnes of her cells grown outside of her body have been distributed and continue to grow in many laboratories throughout the world. HeLa cells have been used in over 80,000 published biomedical research studies. Henrietta Lacks’ cells have helped save “countless lives … bringing us closer to eliminating cervical cancer,” said Senait Fisseha, co-Chair of the WHO Director-General’s expert advisory group on cervical cancer elimination.
Therefore, she deserves high respect from the present and future generations. Her life-story, based on 11 years of painstaking research, has been published; The Immortal Life of Henrietta Lacks by Rebecca Skloot in 2010, is a New York Times bestseller. The book was turned into a movie by George C Wolfe in 2017. “The biotech industry was born on the use of Henrietta Lacks’ cells,” Wolfe has said. “HeLa is this incredible medical phenomenon. And then a few blocks away, there was a family that knew nothing about it.”
That the “family knew nothing about it,” is a serious problem. A portion of Henrietta’s tumour was given away by her cancer surgeon to a researcher without her knowledge or consent. Even though this was legal at that time, the action was unethical and unjust. The HeLa cell line was established in 1951, and has been commercially grown and sold by Thermo Fisher Scientific company. Total profits run into several million dollars. The Lacks family is asking the court to order the company to “disgorge the full amount of its net profits obtained by commercialising the HeLa cell line to the estate of Henrietta Lacks”.
Past wrongdoings cannot be undone. Wrongdoings continue. But as Martin Luther King, Jr., has said “the time is always right to do what’s right”. Biomedical research on humans is guided by ethical codes that have evolved over a long period of time. Their roots can be traced back to the use of racial hygiene in Nazi Germany to promote the Aryan race. In 1929, the National Socialist Physicians’ League was formed. Murderous and torturous human experiments were carried out in the concentration camps. In August 1947, the so-called “Doctors’ Trial” was conducted in Nuremberg in which 20 physicians — accused of human experimentation — were tried. This trial resulted in the formulation of a code of ethics — the Nuremberg Code — the most fundamental of which is that obtaining voluntary consent is essential for enrolling a person into a research study and for collecting biospecimens.
Last year, the editor-in-chief, Dave Curtis, of the oldest human genetics journal — Annals of Human Genetics — resigned stating that “I think that there is ample evidence that doctors and scientists in China are involved in human rights abuses and I feel uncomfortable with having to consider submissions from China.” As a part of surveillance and criminal control, the Chinese authorities — primarily law enforcement officials — have been collecting blood samples from residents of Xinjiang province without obtaining their consent and storing their genetic profiles with identifiable information. These profiles can later be used to violate the rights of an individual.
Eight of the 25 members of the editorial board of the journal Molecular Genetics & Genomic Medicine resigned because the journal had published a set of papers in 2019 on forensic genetics based on data generated from blood samples of persons without documented evidence of having obtained consent. Recently, two papers reporting results of blood analysis published in the International Journal of Legal Medicine were retracted. The Chinese authors had not obtained consent to collect blood samples from persons belonging to Tibetan, Uyghur (mostly Muslim) and Hui minority populations. These retractions are a scar on the scientific integrity of the authors and on the system.
Retractions have become a hallmark of scientific misconduct, which is growing at an alarming pace even in India. About 1,000 reports published by scientists from India have been retracted since 2010 as listed in the online database Retraction Watch. The growth of scientific misconduct is strongly associated with some modalities of professional recognition (such as, election to science academies, awards, medals, etc.) and promotion of scientists that are linked to the number of publications, especially in the so-called “high-impact” journals. Some professional recognition is a precondition to being selected as directors of institutions, vice-chancellors of universities, secretaries of agencies, etc. Thus, there is pressure to publish more and rapidly. This pressure and unrealistic aspirations are eroding the integrity of scientists. Plagiarism, data-doctoring or image-manipulation to support our favourite scientific hypotheses are now common. Technological advances have eased scientific misconduct. Offending scientists, especially repeat offenders, should be stripped of the accolades and promotions that they have gotten. To the extent possible, a background check for indulgence in fraudulent practices should be carried out before one is appointed as the head of an institution or given an award. Inaction against scientific misconduct, demoralises honest scientists. More importantly, science in the public eye is tarnished.
The writer is distinguished professor, National Institute of Biomedical Genomics, Kalyani