Wednesday, July 13, 2011
The Immortal Life of Henrietta Lacks - Rebecca Skloot
What truly astounded me about the story told in the book was that, until now, I had no idea about Henrietta Lacks - or even HeLa cells - much less the types of scientific advancements that her cells paved the way for in modern-day society. That got me thinking - why? I consider myself someone that is fairly well-educated. I graduated from one of the top high schools in the state of Illinois, took several biology classes at the university level, and have taught Science classes the past 3 years of my career. If HeLa cells have done so much for society, why is it that until Skloot published this best-seller, hardly anyone had ever heard of the woman from whom these cells came from?
Another factor that concerned me was the fact that these cells were taken without Henrietta Lacks' consent or knowledge. Was this done because the doctors figured that since she was getting free medical care for her cancer, they were in some way "entitled" to these cells and the subsequent experimentation and research they would be doing upon them? Was it because she was a minority? One of the members of the book club that I am in brought up the point that the time period of the events had something to do with how the cells were obtained, and subsequently used. In this day and age, with Internet diagnosis-tools and malpractice lawsuits galore, patients are often taking over the job role of doctors and self-diagnosing themselves, going into doctors' offices only to obtain confirmation and/or medication. In the 1950s, especially at a top hospital like John Hopkins, the position of doctor was more highly regarded. Patients listened to doctor diagnosis and recommendation, rather than the other way around. Hmm, interesting ... but that still doesn't excuse the fact that upon discovering that Henrietta's cells were "special," no one in her family was told.
This leads to the issue of cell patenting. Currently in the United States (and many countries worldwide), it is illegal to patent cell lines. The argument is that cells are made naturally, so they're not something that can be patented. But, why not? Cells belong to people! If there is something special to be found about the cells that the body produces, even if they are produced naturally, why shouldn't the person from whom they come from be able to patent them to therefore ensure that any scientific advancements - and perhaps even profits - made off of their cells be passed on and credited to them. Of course, HIPPA laws then start to factor into the argument. In theory, if all current laws and procedures are put into place correctly, cells should not be able to be traced back to a specific person; however, if lab results can be traced back to a specific patient, then I'm sure the same encoding procedures could be used for cells that are obtained and used for scientific research purposes. At the very least, is it not one's right to know what is being done with tissues obtained from their body? Profits and money-issues aside, I think that people would want to know if some amazing scientific breakthrough could be credited to their body. Granted the knowledge of scientists who spend, in some cases, their lifetimes working with cell lines attempting to find cures for the slew of maladies that affect humans worldwide, I'm not arguing that their hard work should not be acknowledged. Of course these brilliant scientists should get credit for their work! All I'm saying is that the individuals whose bodies (or at least body parts) help in the process should be willing participants that are aware of the fact that their cells are being used for scientific research. I am an organ donor - that's a program that I signed up for when I obtained my drivers' license; however, when I go to the doctor and she obtains samples of my cells - whether blood, cervical, or skin - I expect that the only work done upon those cells is analysis that I am fully aware of. If my cells are found to be special or in some way particularly unusual and it's believed that something bigger can be discovered as a result of their characteristics, then by all means I'd certainly consent to their use in research, but I would want to know - even just for my own curiosity.
The Immortal Life of Henrietta Lacks brings up a lot of different questions and issues - many that you would never come to think about otherwise. It's a wonderful read to share with friends and have some high-quality, intellectual discussions.