I want you guys to think for a moment about this simple example that could possibly lead to an unending discussion of human rights and what we consider to be our own property: You are in a doctor’s office getting a regular physical, checking up with your physician once every year to make sure that you are physically healthy and there is nothing wrong with you. Remember when you were a kid, and you just hated getting your blood taken every single time because it was a scary process? Well, even as I am now a fully legal young adult, after reading “The Immortal Life of Henrietta Lacks” by Rebecca Skloot, I am even more terrified of what goes on in the doctor’s office.
Did you know that your blood, when it leaves your body, could possibly not be considered as your own anymore?
Even though that blood was in you for a long time and had been circulating throughout your body for as long as you could remember, it’s all fair game for the taking when the doctors do yearly examinations. Potentially, they can do whatever they want with it and not have to ask for your consent in terms of secondary research. Even if you were to voluntarily give up bodily objects and fluids, they could still be used for profits and commercialization, which you would have no say in where the money that could be made from it would go. “‘You can’t ignore this issue of who gets the money and what the money is used for… I’m not sure what to do about it, but I’m pretty sure it’s weird to say everybody gets money except the people providing the raw material’” (323). Henrietta Lacks’s family specifically, never even saw a penny out of the millions of dollars that were made from HeLa cells. How would you feel if companies were making multi-million dollar profits off of your cells, and you didn’t get anything out of the deal? I’m thinking that you would feel pretty shittily if you ask me. Back in the 1960s, African Americans and Whites were segregated, and African Americans were under a lot of pressure due to racism, and could not fight for their rights at all, which made Henrietta’s situation a lot more difficult.
Besides Henrietta Lacks, there have been other examples of commercial use of one’s cellular composition with voluntary consent, but a lack of compensation due to the loophole that implies that those body parts are no longer owned by the donor. A man in the 1970s, John Moore, sued UCLA (University of California Los Angeles) because a doctor at the university “developed a cell line from Moore’s T-lymphocytes and patented this cell line… Between 1984 and 1990, the patent earned more than 3 billion dollars” (“Ethical and legal considerations regarding the ownership and commercial use of human biological materials and their derivatives”). Due to legal binding of ownership due to the patent, John Moore was left with nothing, and the court ruled his statements of ownership to be false, due to the fact that although the cells that were given to the university were Moore’s, the ones that were patented in terms of the cell line were descendants of the original cells, which denied his right to sue against the commercial use of these “new/fresh” cells. It’s mind-boggling to me that we, as humans, could manipulate the law and find loopholes in order to gain personal achievement and profit from someone else’s loss and pain. If you read my first blog in this series, then you definitely know that acts like these are blatant deceit, and go against the laws of ethics.
However, there has been some good that came out of this situation. For example, due to Henrietta and her family’s event with Johns Hopkins Hospital, new laws have been placed to further protect the rights of patients as well as to discourage doctors and scientists that practice unauthorized research and experiments. One of the laws was the Common Rule. “Since the mishandling of Henrietta’s rights, the government has acted comprehensively to protect research subjects… the creation of the so-called Common Rule… is shorthand for the Federal Policy for the Protection of Human Subjects that was first published in 1991 to protect vulnerable categories of test subjects” (Stump 130). Although the Common Rule was established approximately 30 years after Henrietta’s case, it still shows a progressive movement forward that is leaning towards the protection of those that could possibly be mistreated or lied to about where exactly parts of their body are contributing to as well as whether or not it is ethical to do such research if it invades patient privacy.
I think that it is really important for us as a community, as well as individuals, to stand up for ourselves and expose what really is going on in the medical research system. Granted, these facilities have helped create scientific breakthroughs and developed vaccines in order to prevent diseases from spreading. But, I do not think that it is fair to cut the donor out of the deal and to have to lie and twist a law in order to get what you want. The next time you go to the doctor’s office, just think about what exactly “good” people can do with what is rightfully yours, and what you can do in this world to protect it.
Signing off,
Christopher
Chris's CST Blog 