As you may have noticed I have been reading a lot of books lately, but this one by far has to be my favourite. It was one of my Professors that recommended it to me, so interested I bought it.
Anyone who has studied biology has heard of HeLa cells. They are the most important cell line we have, they have been the subject of countless experiments and have been invaluable to modern biology and medicine. This is the story of the woman from whom these cells came, the only woman that can be said to have reached anything close to immortality. I was expecting the book to be interesting if a little dry and perhaps tedious in some parts. From the first page, however, I realized that I was sorely mistaken.
This book really tells four stories, all expertly wrapped up into one novel. The first is who was Henrietta Lacks? What was she like, what did she like to do? The second story is a history of medical research and HeLa cells, what they did for biology and what medical research was like before the 1950s. The third is the journalist’s own story, how she found Henrietta’s family and her struggle to reach out to them. The fourth is one about bioethics, and it poses a very interesting question: is it ethical to take someone’s cells, and sometimes profit from them, without their knowledge or consent? Do we own the tissue that is surgically removed from us, even if it is usually discarded? Do we have a right to say what happens to those cells or tissues once we voluntarily have them removed from our bodies?
Starting from the beginning, as soon as I read the introductory remarks I knew it was the book for me.
This is a work of nonfiction. No names have been changed, no characters invented, no events fabricated. (…) Anything written in the first person in Deborah Lacks’s voice is a quote of her speaking, edited for length and occasionally for clarity. (…) Whenever possible I conducted multiple interviews with multiple sources to ensure accuracy.”
This is my kind of book, and the kind I hope to write myself some day. No embellishment, no omissions, just straight fact. I liked it already, and the rest did not disappoint.
Other than being a fantastic read, there were a few parts of the book that really opened my eyes, for better or for worse. As a scientist I used to get very annoyed with people like my mother who viewed everything and anything that comes out of a lab with a veil of mistrust, with a subconscious feeling that scientists are amoral robotic entities that never consider the ethical ramifications of their actions. I used to think that this was largely due to the horrific way that scientists have been portrayed both by the media, in movies and by the screams and shouts of people that do not understand the science they are publicly blasting, like creationists or anti-vaxers. After reading this book, however, I realized how stupid I was to think that. I have had the good fortune of coming into an international scientific community where bioethics is an extremely important part in everything we do. There are committees that make sure that every experiment you conduct is by the book. If you are using animals in your research, you have to demonstrate that you are using the minimum possible number of animals to get a statistically significant result, that you are housing the animals in the most optimal way possible and that you are never causing the animals unnecessary harm or suffering. If you are conducting clinical trials you have to demonstrate that you have the patients’ full understanding and consent, that they know they can drop out of the study at any time, that you do not admit patients that are at high risk of dying during the study if they are placed in the control group, that all patients including the ones that received the placebo get treated at the end of the study if the drug has proved effective, that the drug does not present high risk of extreme side effects (as demonstrated by animal tests and previous clinical trials) and that any side effect you suspect the drug might have is communicated to the patients. This is the state of biomedical research as of now, but in my grandmother and mother’s day none of this existed, and the scientific community is still feeling the ramifications of the terrible reputation it earned itself in those days. Whether it be experimenting on poor African Americans causing them to die horribly despite having the means to sure them or injecting patients with cancer cells without their consent, I was horrified at what was deemed acceptable to these researchers that I can only describe as sociopaths. I do not know a single person that would ever defend the experiments that were so casually and callously performed only 60 years ago, and that made me ask myself: Is it that even then they were very rare but they became famous due to their horrific deeds, or is it that the new bioethical systems in place make the scientific community less attractive to a god-complexed fame-hungry sociopath, who thus chooses a different career path?
The aspect of this that really made me think is the issue of the ethical implications of tissue research. The people that argue against “rights” for tissue donors made two important points: 1. That the person from whom the cells or tissues are taken are not actually doing anything, it is the scientists that put in all the hard work to culture them, modify them, experiment on them and find all the optimal ways to do these things. These cells could thus be considered their “intellectual property”, they are the ones that invested the money to work on them and thus they are the ones who should benefit from any reward. 2. Informed consent is one thing, but when you start saying “I want my cells to be used in this research but not in that other research but not if the research might be used for that purpose” it can mean a halt in research, because it all becomes exceedingly complicated.
I get both points, but it is definitely not as simple as that. Admittedly HeLa cells are a special case. They are sold all over the world, and you’d be hard pressed to find a cellular biology lab that does not have vials of HeLa cells in their freezers. There is a lot of money made on selling them, and yet Henrietta Lacks’s family lives in extreme poverty. Her daughter, Deborah Lacks, sums up my feelings on this:
Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money for drugs my mother’s cells probably helped make.
I can’t ignore how the injustice this situation makes me feel, that while without the minds that made HeLa cells possible should undoubtedly get the credit for what they accomplished, Henrietta’s family should not be unable to pay for their own medical expenses.
The second point that is brought up is one that I understand, although I do not think it needs to be that complicated. I think that over bureaucratising cell research could cripple biomedical research, it does not have to be an all-or-nothing debate.
I definitely believe in informed consent, and I don’t think that it needs to be complicated. Personally, I think that the bioethical problem can be summed up with two forms, two consent measures. 1. Consent to use your cells or tissues in research, whatever the research might be, without going into the details of what research is acceptable and what research is not. The patient should know what those research possibilities are and decide whether or not they accept them. 2. Consent to profit from said cells, which is only something that crops up in a handful of cases. At this stage, you can stipulate a base percentage that goes to the patient – not one that is negotiable, but one that is stipulated by law, say 15%. The patient gives consent that his or her cells can be used for financial gain with 15% of that gain going to them, yes or no.
Read the book then tell me what you think. Is it too simplistic, still too complicated, or at least far better than the total lack of legislation we have in this regard at the moment?