Defining Henrietta Lacks

Matt Wheeler | 18 August 2023

Throughout my career so far as a medical writer, I have been fortunate to be involved in a wide range of projects, gaining experience of new types of work on a regular basis.

One such baptism of fire included an introduction to 'speaker slides.' Receiving slides from an expert in the field to make ready for presenting can feel a little daunting, but it is an invaluable opportunity to learn more about an evolving treatment option, for example, or to be more informed about a disease area. One thing that can be challenging when working on someone else’s slides is identifying and defining the medical abbreviations and acronyms, which seem to be essentially infinite. This can be particularly difficult when an abbreviation may have multiple meanings! Google can sometimes only take you so far. However, one thing I am certainly glad about is coming across this abbreviation–HeLa.

HeLa cells are named after Henrietta Lacks, an African American woman who died in 1951 as a result of aggressive cervical cancer at the age of just 31. A tumour biopsied during her treatment was the source of the first 'immortalized' human cell line, ie, one that can reproduce indefinitely under certain conditions. These cells have since been used in a vast number of research applications, including the first polio vaccine (among many other vaccines), cancer investigations, and advancements in gene mapping.

Investigative journalist Rebecca Skloot brought Henrietta’s story to the fore in an excellent book, The Immortal Life of Henrietta Lacks, originally published over a decade ago. Whilst she describes the scientific advances made possible by HeLa cells in detail (while remaining accessible), the ethical implications of what happened to Henrietta are also explored. Her permission to use her cells was not sought, and her family were not aware of the existence of the cell line until years after Henrietta’s death; they have also not benefitted from the commercialisation of the cells.

The issue of consent is obviously viewed differently today, over 70 years later. This is explored further, including the impact of racial disparities in both medical research and treatment. There is often a disconnect between clinical study and real-world populations, including race, ethnicity, sex, and age. In the UK, as in many places around the globe, the COVID-19 pandemic shone a light on inequalities in healthcare and their impact on outcomes. In medical communications, we are beholden to fulfil our role in driving towards equity, whether that’s through ensuring that all pertinent populations are appropriately represented in promotional materials, or considering the best way to reach patients with information (for example, if they don’t have reliable internet access)–this must be part of project planning from the very beginning.

I would thoroughly recommend reading Skloot’s book. The book quotes the below–words to live by, whether in the realm of medicine, medical communications, or indeed any other context.

“We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph.”

—Elie Wiesel, Nazi concentration camp survivor, and renowned author