In her book The Immortal Life of Henrietta Lacks, Rebecca Skloot tells a story of a woman who helped in advancing medical research without knowing it. Skloot (2010) addresses some of the most serious and common ethical issues that arise in medical research as well as nursing practice. Such themes as race, power, and poverty are central to the book. These themes also resonate with experiences every patient and nurse has had at least once in their lifetime. In this paper, I will reflect on the way the book relates to my own practice, experiences, and values.
Although I have never been in a situation similar to Henrietta Lacks, I still had to deal with some aspects of the issue related to the patient’s control over their body. Being a patient, I have signed a plethora of consent forms where I confirmed my decision to go through certain procedures or agreed to have my data used for some statistical purposes. I cannot remember, however, whether I signed a form concerning my agreement to donate my cells for the purpose of research.
As a nurse, I also have handed consent forms where patients agreed to certain procedures. I believe the situation with Henrietta Lacks is completely unacceptable and unlikely to happen in the contemporary healthcare setting in a developed country. Modern researchers pay specific attention to ethical issues as they have to comply with quite rigid standards that have been developed in the course of debate concerning the cases such as Henrietta’s.
As far as I am concerned, I would feel angry and committed to act if I, being a patient, learned that I had not been in control over my own body. My firm belief is that an individual’s personal rights are the highest priority, even if other people’s wellbeing can be affected. I have no doubt that the person has the right to decide what to do with their body. Likewise, the individual who can donate something is the one to decide whether others would benefit from this.
If I found out that my cells were taken without my consent, I would go to the court and draw the public attention to the matter. Unfortunately, Henrietta and her family did not have such an option in the middle of the 20th century. At this point, I would like to note that my feelings could be different if I was “the other” and had to live as a representative of a minority group. As far as I remember, I have never been “the other” or felt that way. At least, I cannot remember any serious situations related to otherness.
After having read the book, I reflected on the responsibility of a nurse to make sure that the patient’s rights are met. I believe that nurses involved in the cases (especially Margaret or Mary, who helped doctor Gey) shared partial responsibility. The nurses who were aware of the research had to tell the patient and her relatives about the doctor’s actions or, at least, could ask the doctors about those people’s consent. The nurse should ensure that her actions are ethical, but it is also critical to encourage (or inspire) other healthcare professionals to act in accordance with ethical codes or share certain values.
My cultural values are consistent with my spiritual foundation, which makes me act in an ethical way and encourage other people to think about the consequences or morality of their actions. I am a Christian, and I believe in the betterment of humankind. Perhaps, this is the reason for my focus on personal rights. I believe that all people will voluntarily share what they can if it can help others. Of course, some people need some time to understand and accept their better half, but this will inevitably happen. Therefore, it is impossible to take something from a person without their consent or even knowing it, even if it can save millions of people. I strongly believe that Henrietta would voluntarily give her cells for research, so there was no need to conceal this information.
At that, the healthcare professional’s attitude was a norm and was not considered immoral at the time when the US society was segregated. Race-related ethical issues are central to the book in question. It is not only about the question of whether the patient has the right to know and decide. Skloot (2010) makes it quite clear that discrimination, race, and patients’ financial constraints were some of the major aspects that led to the unethical conduct of the healthcare staff. The desire to make a profit was another premise for doctors’ actions. Many people (including researchers, doctors, pharmaceuticals, to name a few) made huge profits but never shared a part of the money with the family that lived in poverty.
In conclusion, the book under consideration unveils some of the most challenging issues yet to be solved. Clearly, in developed countries, it is hard to imagine that such a situation can happen again. However, healthcare professionals still may act in an unethical way in various aspects of their practice. The book made me feel stronger about my own values. I am committed to ensuring patients’ safety, autonomy, the right to decide, and the right to know. Nurses share responsibility, so I will try to be more active when advocating for patients’ needs and rights. I will also try to encourage my colleagues to conduct ethically in all situations.
Reference
Skloot, R. (2010). The immortal life of Henrietta Lacks. New York, NY: Crown Publishing Group.