I finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot today. In 1951 when Henrietta Lacks was 30, she developed extremely aggressive cervical cancer. When she went in for surgery for cancer treatment, the doctor took a sample of the tumor. The cells from the tumor were cultured in a lab that had been trying unsuccessfully to find a way to keep human cells alive in culture. Ms. Lacks’s tumor cells, named HeLa by the lab, were the first cells they were able to keep alive in culture. Because they were able to keep them alive and growing, the cells would later become a vital tool for medical science. The scientist who first kept HeLa alive in culture gave the cells away for free to numerous other scientists who used them for various research. The cells helped in part to develop drugs for herpes, leukemia, influenza, hemophilia, and Parkinson’s. They helped develop the polio vaccine and in gene research, including most fittingly genes that cause and suppress cancer. Companies were created to use and produce the cells. Ms. Lacks’s family, however, did not know that the cells had been taken nor that they were being used for so much research. They did not know they existed until 20 years later and received no benefit from all this research. Sadly and ironically, they were so poor they couldn’t afford health insurance, and most were not educated enough to really understand how part of Ms. Lacks could still be alive or what it meant. To make matters worse, shortly after learning about the research on her cells, researchers asked family members to give a sample of their blood to them to aid them in their research. The researchers didn’t explain to the family what the samples would be used for, or at least they did not explain it in a way that the family members could understand.
Anyone who does research involving humans should read this book. Actually, everyone should read this book. It is incredibly interesting and well written. I loved learning some science from it, but it was also nice to learn about the people involved, both the Lacks family and the scientists involved with HaLa. The book gives recognition and a voice to Ms. Lacks and her family who for far too long had none. It is simply horrible how they had been treated in the past, and it is an important lesson to researchers on how not to treat research subjects and their loved ones. The book discusses a little bit of the history of human medical research and the ethics and techniques involved. The introduction of informed consent in medical research is discussed to a great degree. The concept of when a person loses ownership of their own tissue or fluid once the tissue or fluid is no longer a part of their body is discussed.
I, personally, am conflicted about the issue of ownership of body tissue once it it removed from the body. For my dissertation I did research that involved humans. Our research plan was reviewed by an Institutional Review Board as all human research studies are now. Our subjects gave informed consent. They willingly participated, allowed themselves to be outfitted with an air sampling device and to have medical tape placed on and then removed from their skin, and gave urine and blood samples. They knew the risks of participating, which really was only a possible reaction to the medical tape (which none had) and the prick of a needle if they gave blood. We explained what we were doing and why and hopefully they all understood in general what we were doing, even if they did not fully understand the details of the research. We took various steps to protect their identity and information. We made no money off of the research, but my advisor applied for grants based on it, and several of us obtained Master’s and Doctorate’s based on it.
Years ago I had two dental implants put in my mouth. The dentist who implanted them was a professor at the local school of dentistry, and because of certain characteristics of my dental history, I made an interesting case for her to operate on and later teach about. I was awake the whole time, and the surgery took much longer than it needed to because every 15 minutes or, she stopped what she was doing to take photos of the current status of my mouth. I get amused thinking about her students sitting in class viewing photos of my mouth while she discusses my case. However, I am confident my identity is protected, and furthermore I gave informed consent. I was awake. I knew full well she was taking photos and planning to use me as a case study, and I am rather pleased that I might be able to help some dentist and their dental patient in the future.
However as someone, who like the vast majority of people, who has ever given a sample of my body fluids analyzed for medical reasons, the idea that I don’t know what happens to the sample after it leaves me and who can run tests on it, makes me concerned. I once had an infected sebaceous cyst removed by a surgeon. I know it went to pathology to confirm the diagnosis that it was just a sebaceous cyst, but after that I have no idea. From what I have read in the book, it could have then gone on to an academic or commercial research lab. As a scientist, I certainly want scientists to have access to samples that can further science, but it bothers me a great deal that someone could potentially make money off of something found in my cells or fluids. If something unique is found in my tissue that can lead to the cure or treatment for a disease, I can support that, but the idea that a commercial research facility could use it to make money seems wrong to me. At the very least, I would like to know what ultimately happens to any of my tissue or fluid samples. Are they simply destroyed after analysis or are they stored somewhere or transferred somewhere? Who can analyze them and for what? I think that is another reason to read the book, so more people will talk about this subject.