On International Day of the Girl, Abbey Research wanted to take a moment to highlight a remarkable story about a woman whose DNA has changed the world. While we want to focus on celebrating the wonderful contributions of women in a range of fields, with the hopes of empowering young women everywhere, it is also important to consider the unknown contributions and how we can ensure they are represented.
In this Pop Culture Spotlight we want to focus on Oprah Winfrey’s latest project, a film adaptation of the book The Immortal Life of Henrietta Lacks. The book was first published by Rebecca Sloot in 2010, culminating her decade of research into the children of Henrietta Lacks and the use (and reproduction) of her cells for scientific research by Johns Hopkins (and many other) University.
From cancer research to AIDS breakthroughs HeLa cells (the pseudonymous abbreviation given to Lacks’ tissue) revolutionized cell and tissue research in the medical scientific community in the 20th century. Before Lacks died from cancer in 1951, Johns Hopkins’ took a sample from a tumor, grew her cellular tissue, and used (and sold) the results to make some of the most remarkable medical breakthroughs in the past 50 years.
Yet, at the crux of the story lies significant questions about conducting ethical research and using human cells without patient consent. The book and film tell the story of Henrietta’s children – who have not benefited either medically or financially from their mother’s anonymous celebrity. Though HeLa cells are found across the world in labs and medical facilities, Lacks’ children spent decades unaware of their mother’s ‘immortal’ impact. Sloot’s (Rose Byrne) research uncovers the true reach of the HeLa cells but also highlights how little her children were aware of their mother’s research impact.
The film, which follows Sloot’s initial meetings and research with Lacks’ youngest child Deborah (Winfrey), deals with issues of ethics and access, making claims of racially focused early medical experimentation by claiming that Hopkins used to target poor, black men for research studies. Patient consent is not required for cells so long as the donor’s name is removed, and therefore, the doctors who turned Henrietta Lacks’ tissue into HeLa cells were under no legal obligation to inform her family. However, as her replicated tissue and cells have entered the world of profiteering research, the issue of compensation became an aspect of her family’s advocacy.
Here at Abbey Research, we are concerned with conducting ethical and empathetic research and the film served as an interesting foray into some difficult topics. While Hopkins was not legally at fault for their behavior, it opens the door on questioning the ethics of early medical and scientific research. The film seems to argue for the importance of bringing humanity back into research projects and for the most part portrays a family that is intent on getting recognition for their mother’s contribution to science.
Advances in research cannot be accomplished without the involvement of human beings – whether as researchers or participants – acknowledging that contribution is necessary to conducting ethical and empathetic research. The attention brought to the HeLa case through the new HBO movie has again put the spotlight on the issue of patient consent. It remains to be seen if the scientific community will be prompted to change a long standing methodological practice, even with the significant impact of popular culture. The film is also an important reminder that women and girls benefit when untold stories of significant women historical figures are brought to light, and reminds us that many times we have to fight to be heard.