DOI: https://doi.org/10.20529/IJME.2011.075
The immortal life of Henrietta Lacks is non-fiction of a rare quality in creative writing. The author, a science journalist, weaves a multilayered narration about medicine, medical research, faith, racism, poverty, and ethics with a skill that renders to her composition an “immortal quality”.
Henrietta Lacks was an African-American woman, a mother of five children, who died of cervical cancer in 1951, at the age of 31. At the Johns Hopkins Hospital in Baltimore, United States, where she was receiving treatment, tissue specimens were taken from her cervix for research, without her knowledge. The specimens turned out to be the source of the first viable and amazingly productive cell line – the famous HeLa cells so familiar to all engaged in medical and cell biological research. The cells became the fountainhead of a range of medical discoveries, research applications, therapeutics and vaccines. The book provides a human face to the many ethical issues concerning the HeLa cell line.
The cervical tissue specimen was used by George Gey at Johns Hopkins. Gey’s assistant labeled the tubes where the cells were stored “HeLa”. The cells doubled in number every 24 hours and never stopped. Since then many trillions of cells have been produced and used in laboratories and factories all across the globe and are robust even after 60 years. The polio vaccine, the drug tamoxifen, gene mapping, in vitro fertilisation, treatments for influenza, leukaemia, Parkinson’s Disease are all applications which have harnessed the biological potential of HeLa.
Science is not the only fascinating aspect of this book that lifts it to the rank of a best seller; nor is it the central theme. The author, in her exploration along with Deborah, the daughter of Henrietta, who did not know her mother, has been able to knit together a story of the sad life of Henrietta, the racist norms of that period, the deprivations of African-Americans, and the almost non-existent research ethics of the mid 20th century. It is shocking that even after 20 years after HeLa became a famous biomedical research tool, Henrietta’s family was unaware of these developments. Needless to say, they did not receive even a few pennies of the profits from the multimillion dollar industry in biological and cell culture based on her cells. Much later, they were even subjected to investigations without their informed consent.
In February 2010, Rebecca Skloot spoke at the Kimmel Cancer Centre in Philadelphia to a crowd of physicians and scientists, most of whom knew HeLa cells, but nothing else of their origin or history. She told the story of the young black woman who reported to the clinic at Johns Hopkins for treatment for a tumour in her cervix. She received the treatment of the time, a course in radiation. The diagnostic sample took a course of its own. It went to a cell biologist who knew nothing about its origin until it started producing manically upon culture. Mass production ensued. HeLa was distributed around the world. Skloot described the family’s anguish at the fact that a vial of HeLa cells costs $250 and some HeLa-derived products for treatment cost up to $10,000, while many members of the Lacks family go without health insurance and treatment for their illnesses.
As research and discovery activities go global, there may be some warnings for us in India. Human subjects who participate in experiments give “informed consent”. How informed is this consent? Does the consent form list all possible uses to which a specimen may be put? For example, DNA material is collected from human subjects. Its use must be regulated and cannot be left to the goodwill and largesse of corporations which are driven by profits. What about pharmacogenetic information based on DNA collected from subjects in trials? This is of value to pharmaceutical companies.
A myriad possibilities exist and we can only address the issues by building trust and sharing among scientists, society and industry. And we will have to travel some distance to reach that state of affairs. Unlike in the USA during Henrietta Lacks’ period, we have no racial divide in India, but this is offset by economic and educational deprivation.
The book is a ‘must read’ for physicians, researchers, corporates in healthcare, social activists, and those engaged in medical ethics.