In the Afterword section of The Immortal Life of Henrietta Lacks story, written by Rebecca Skloot, it details the issues of taking human tissue samples and using them for research. There are numerous arguments relating to money, consent, specific people who have had their tissues tested and many others. Some people believe they should not have control over their tissues, while others do, and I am one of them. I believe people should have ownership over their tissue samples because our tissues are valuable and make us who we are, not just objects being tested for science, we should have consent on where and who they go to, our privacy should be protected, and no one should be making money off our samples.
The first part of the Afterword piece describes how our tissues are on file somewhere and we may or may not know it. They are also kept indefinitely, whether we are alive or dead. Our samples can be taken from examinations, operations, tests, procedures, clinical trials and bodily donations. On page 321, it states, I think people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research (Skloot, 2011, p. 321). I do not agree with this point at all because we are not obligated to do anything we do not want to do. It is our body and we can choose to do what we want with it. After we are passed way it is a different story. Our lives are in the hands of our loved ones and significant others at that point.
Consequently, another reason we should have control over our tissues, is we should have consent over who they are going to and where they end up. There is a quote from page 317 that states, For most people, knowing if and how their tissues are being used in research is far bigger than profiting from them (Skloot, 2011, p 317). In addition, there is something known as the Common Rule which requires consent for human research. However, it is not federally funded, or the identity of the person is not identified, so it cannot be considered research on a human specimen. I do not agree with this though since regardless if the identity of the person is known or not, research is still being done on a human body, or part of one. It is even said that one hundred percent anonymity is not guaranteed because in today’s world, genes can be put together and matched to the person being tested. Scientists and researchers do not take that fact into consideration.
Moreover, our privacy is another major factor in ownership of our tissues. A quote from page 318 says, Tissue-rights activists believe it is important for donors to be able to control who has access to their tissues, because they worry that information gathered from tissue samples might be used against them (Skloot, 2011, p 318). This is a key statement since in fact we should be able to have full control over who has a part of us. Also, as of 1996, there is now a federal law in place preventing privacy violation, like what happened to the Lack’s family, known as the Health Insurance Portability and Accountability Act (HIPAA). This act is used everywhere in the medical profession, including pharmaceutical companies, doctor offices and hospitals. HIPAA is not only a law, but it is also a safeguard and security blanket to protect patients from having their medical information released without proper consent from the patient and or parent or guardian.
A final point about people having control over their tissues is a money factor. In past years, there have been patents created by the United Stated government to fund human gene testing for diseases and cancer such as Alzheimer’s, colon, breast and asthma. Human tissues and tissue research will always be commercialized and unfortunately, we cannot ignore the issue on who gets the money and what it is used for. There have been cases taken to court relating to financial agreements with people demanding money, but int turn tissue donors did not profit one penny. It is also illegal to sell human organs and tissues for transplants and medical treatments, but it is legal to give them away. This is a fact I did not understand while reading this part. Rebecca Skloot mentions in her book that we live in a market-driven society which involves science whether we like it or not. Although, ethical issues involving money, human tissues and rights remains an issue and needs a resolution.
Throughout the last section of the story, there are various points explaining tissue research and how they relate back to Henrietta Lacks’ HeLa cells being used for research without her or the families’ consent. The arguments of consent, money, and people who have had their tissues tested remain an issue. Our tissues are priceless and define us, not just entities being tested for science, we should have approval on where and who they go to, our privacy should be protected, and no one should be profiting off our samples. If researchers asked us to use our tissues, it would be different then just doing it without any kind of indication. Overall, our tissues belong to us and only we should have the control over them, regardless of what others think.
Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York: Broadway Books.
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