Case Study: The Henrietta Lacks

The Henrietta Lacks case brings up a lot of different issues, most of which have to do with ethical dilemmas. First off, Henrietta is an African American woman who came from a poor part of Virginia and was poorly educated and, unfortunately, so was most of her family. Where she grew up was mostly full of members of her family and ended up marrying her cousin, Day, now that is a heavily frowned upon in mainstream society but where she grew up it was normal. She and Day eventually moved to Baltimore, Maryland with their children. Baltimore, at the time, was heavily segregated and racism ran rampant. When she went in to John Hopkins medical center for her first treatment of her misdiagnosed cancer her doctor, without her knowledge, cut a small sliver of her tumor off and gave it to George Gey. Gey then took that sample and produced the first continuously reproducing human cell culture and culture medium to keep them going. After she had died, Gey sent an assistant to get another sliver from her corpse which ultimately failed to produce the same results, but after she had passed Day had only given permission for an autopsy. Eventually,
Henrietta’s cells, labeled HeLa, had taken off and become an important part of medical and scientific research, turning this cell line into a million dollar market. The problem was, while this was going on for decades, none of Henrietta’s family had been informed of what was going on until eventually, after numerous publications misnamed her, someone got her name right when writing an article on the person behind the cells and people had started asking her children a great many questions. No one took the time to explain what was happening to the family; no one informed or educated them until Rebecca Skloot had started writing her book. The fact that no one took the time to explain things to her family hits me harder than the lack of informed consent. No one had the decency to explain to the family what the cells were, what they meant, the process of making them, or their uses. Anyone who did explain it, before Skloot, had used a ton of medical and scientific jargon and sent them away. Her children were not well educated and had almost no idea of what anything meant. They thought their mom was still alive, that she could feel everything, that they were cloning her, making mutants out of her, and why should they have thought any different? They didn’t know any better! No one took ten minutes out of their time to explain to the family of the woman who unwillingly made one of the most important contributions to science what was happening in a way they could comprehend. I cannot grasp that lack of compassion that the individuals before Rebecca had for this poor family and no one saw anything wrong with it. No one saw anything wrong with exploiting the family, using their DNA but allowing them to think other tests are being done. I cannot understand how no one along the line had the thought to explain anything to them, instead they got an autographed medical text book thrown at them and a bunch of tabloid junk. I feel as though an anthropological perspective was desperately needed in this case. That way of seeing things would have helped doctors and researchers better understand where the Lacks family was coming from. They would have been more empathetic. I feel as though many would have seen that keeping them in the dark was wrong. That scaring them was wrong. That not getting permission from them was wrong. I feel that informed consent would have been a longer standing necessity had doctors and researchers been educated in an anthropological perspective. The Lacks family deserves so much more than medical care as compensation for the whole ordeal, but something is better than nothing. Their mother was taken advantage of, they were exploited, and no one batted an eye. No one thought about the psychological and emotional affects that this case brought upon the family, as long as the scientists got what they wanted. Their mother did not consent for that sliver to be taken, Day did not consent, and neither did her children. No one got permission and did it anyways. They put that poor family through anguish and she ended up being one of the most important people in scientific history and they hid her away. Doctors abused their privilege and the Lacks family suffered. HeLa cells were explained to me in my Biological Anthropology course, before that I had never heard of them. Unfortunately in our class we got a brief explanation on the subject and who she was. We were, however, told how important her cells were and how powerful her cell were, this is of course referring to how her cell hijacked others. After learning about her I had wanted to learn more about the controversy surrounding her cells, I especially wanted to read Skloot’s book. When it comes to the ownership of your body and bodily materials you both own them and you don’t.
Skloot discusses this issue in her 2006 New York Times article “Taking the Least of You”. Boiled down to the core points when that piece of you is attached to you, you own it. When you know you have an important blood line or gene or bodily reaction, you own it and you can make money off of it. Otherwise, you don’t and you can’t. Once it leaves your body or you are not informed of any specific reactions or genes, you do not get a say in what happens, at least that is the stance the law takes at this point. Personally, I do not feel it should matter whether or not they take them from you, those “scraps” still have your genetic sequence, you should still have a say. Unfortunately, not very many researchers, law makers, or doctors would
agree.