"It sounds strange…but her cells done lived longer than her memory." – Henrietta Lacks’ cousin Cootie

Unfortunately, the photos for this post were taken from the web :(

Ok, so the last post about HeLa cells focused on their origin and how they were/are used in research. We’re going to shift gears now and move away from the pure science-y stuff and dive into the controversies surrounding these microscopic yet valuable biological materials! I’ve divided the issues into 3 main categories based on my own thoughts and discussions from the book club:   

Race/poverty

In the 1950s, African Americans still faced rampant segregation. At Johns Hopkins, Henrietta received treatment in the public charity ward set aside for African American and underprivileged patients. Unfortunately, Henrietta classified as both black and poor.

Segregated ward at Hopkins. Source: magazine.nursing.jhu.edu

Doctors often treated public ward patients for free.  Yet, healthcare providers at the time had few scruples about taking advantage of indigent patients for research. We could wonder if doctors at the time would have taken Henrietta’s cells without consent had she been a wealthy Caucasian.  Yet, this point is moot even today. There is still no requirement for consent by anyone in most tissue research. 

Additionally, scientists are often blind as to cells’ more personal origins: naming Henrietta Lacks’ cells HeLa, for example, contributed to a certain type of anonymity. Even Lacks’ family knew little of their ubiquitous use in research until the book’s author, Rebecca Skloot, brought the matter to their attention. Were they not informed about such things due to their race and class status? Should the Lacks family receive monetary compensation for each vial of HeLa cells sold?  I think these are interesting questions to think about.

The Lackses are still poor – Henrietta’s descendants lack healthcare coverage, many of them can’t afford to go to college, and some have been unemployed because they were serving jail time. This is ironic since her cells have tremendously advance biomedical research and providing profit for companies selling these cells. In response to the family’s situation Rebecca Skloot set up The Henrietta Lacks Foundation to donate a portion of the book’s proceeds.  Donations can be made on the website (www.HenriettaLacksFoundation.org). The foundation aims to provide scholarships to educate Lacks’ descendants as well as funds for healthcare coverage for the family.

Bioethics

HeLa cells are now widely used in biomedical research, but there’s been a lot of controversy as to how to take care of these cells, what to use them for, and the fear of creating “monsters” from these cells by manipulating their DNA. There is also the question as to whether the cells actually genetically belong to Henrietta.

The DNA in tumor cells are not inherited – they arise from environmental changes (ex: exposure to mutagens). Therefore, do these cells really belong to Henrietta, and should the family receive compensation for “property” that belongs to them? Biologically, I think the cells still belong to Henrietta – the basic DNA is the same, it’s just been chemically modified with other substances found within her body. With regard to personal property, I think cells should be taken with the permission of the patient, just as people are asked to be organ or blood donors.

Science education/awareness 

The Lackses were unaware for a long time that Henrietta’s cells were being used in research, and after finding that out, it took them a while to understand the science behind the cells. First of all, it had to be explained to them what is DNA, a cell, how cells are cultured, etc. I think as a scientist I take our daily research routine for granted. I used HeLa cells during my first year of graduate school.  At the time, I only knew that they were a human cancer line and that HeLa was an abbreviation of a woman’s name but nothing about the cells’ fascinating historical context. Often, when we work with cells in the lab, we don’t necessarily tie those cells to a specific human being—to an individual with a distinct life story. 

I realized this after reading a particular section in the book when Rebecca Skloot accompanies Henrietta's daughter Deborah and son Zakariyya to Christoph Lengauer’s lab, which contains HeLa cells. Christoph patiently explains how the cells are cultured in the dish, how they are maintained in a special liquid containing nutrients to keep them happy, and how their DNA can change over time due to exposure to environmental cues such as temperature and light. He acknowledges that Zakariyya’s mom’s cells have advanced science tremendously and, for the first time, the Lackses receive a formal appreciation for what Henrietta had provided. The experience of witnessing research with their mother’s precious cells before their eyes offers some closure to the family and alleviates their anger. In the end, more than monetary compensation, the family just wishes for everyone to acknowledge that the cells came from Henrietta Lacks.

Wildtype HeLa cells under a microscope. Image taken by a senior research scientist in a lab that I rotated in my first year of grad school. Goodwin EC et al. PNAS 2000; 97:10978-10983.

The Lackses were not the only ones confused and fearful about HeLa cells' use in research. In 1965, researchers fused HeLa cells with mouse cells to create a cross-species hybrid cell line, intended to help map the human genome.  The public increasingly began to fear the cells, imagining a half human, half mouse (=humice? Actually, there are "humanized mice" whose immune systems have been wiped out so that they can carry functioning human genes, cells, tissues, and/or organs for medical research) hybrid unleashed from the laboratory and taking over the world a la Rise of the Planet of the Apes.  

Humice, not hummus! Ok, actually it's humanized mice. Source: Google Images.

The lack of communication between scientists and the public continues to be a problem.  I think that we really need to work towards removing this barrier, focusing on improving dialogue on the educational, political, literary, and cultural fronts. This book is a great step towards bridging the divide.