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Reaction to Rebecca Skloot’s Novel ‘The Immortal Life of Henrietta Lacks’
My first reaction to this book was outrage. What an extremely disgraceful way for medical professionals to treat a human being. Henriettas story raises questions about ethics, race, and informed consent. John Hopkins University Hospital should be ashamed of themselves! There is an element of time frame that could be used to account for a practice that was status quo at the time but mostly it is just shear disregard for African Americans and their basic rights. There was a doctor/researcher that stated those people wouldnt understand anyway , this shows just how much race and ethnicity played a part in this situation (Skloot, R. (2017). As an African American woman, she was considered less than and not given any respect. The informed consent that Mrs. Lacks signed was not for tissue retrieval. It was for a single operation. She was not informed of the biopsy that they had taken would be used for unjustified cell research.
Rebecca Skloots book shows how actions of John Hopkins affected the entire Lacks family. They did not have sufficient time to prepare for the untimely death of Henrietta. She and her family were not informed of the depth of her condition due to the lack of regard for colored people being second class citizens at this time in history. The family were kept in a continuous state of unknowing due to the ongoing blood draws being done to the children. The children were especially affected due to being place with a sadistic aunt who abused them emotionally and physically and an uncle who abused Deborah sexually. I believe that if she had been told of the depth of her condition and treated respectfully she would have been able to arrange her childrens future lives better.
Henriettas children accidently learned that their mothers cancer cells called HeLa cells were being used in research. Henriettas family lived in poverty and never received any of the financial benefits (Suzanne Mahon, 2017). There are so many different reasons to be talking about this case. As a future counselor I had a hard time reading how Henrietta had been treated. She might have survived if she had been treated with a single ounce of respect. She might have been able to have some time to prepare her family and make plans for her children. Her family would have not had to live in poverty if they had been shown justice. Justice in that way of respect, compensation and human decency.
The ACA Code of Ethics has ethical codes that address each issue I have been discussing. The first and foremost aspect is beneficence do no harm. In the case of Henrietta Lacks there were many ethical issues in my opinion, that did harm without regard for the patient. The researchers did not care for her health, much less who she even was as a person. When asked, the researcher did not even know her name. There was not consent given for research. They considered colored people to be less than so they could do as they saw fit. Ethical code states that C.5. Nondiscrimination Counselors do not condone or engage in discrimination against prospective or current clients, students, employees, supervisees, or research participants based on age, culture, disability, ethnicity, race, religion/spirituality, gender, gender identity, sexual orientation, marital/ partnership status, language preference, socioeconomic status, immigration status, or any basis proscribed by law (American Counseling Association. (2014). ACA code of ethics. Alexandria, VA: Author). I know that the ACA code of ethics was first established in 1959 but I wish there had been some sort of consideration for Ethical code B.1. Respecting Client Rights B.1.a. Multicultural/Diversity Considerations Counselors maintain awareness and sensitivity regarding cultural meanings of confidentiality and privacy. Counselors respect differing views toward disclosure of information. Counselors hold ongoing discussions with clients as to how, when, and with whom information is to be shared (American Counseling Association. (2014). ACA code of ethics. Alexandria, VA: Author).
The Belmont report discusses, justice, beneficence, and respect for persons. The lack of informed consent, or coercive, forceful influences and methods that were used to obtain consent from potential participants; this associated with impaired risk-benefit scales, unjustified research population selections have prompted international regulations to stand firm on principles advocating conscientious clinical and ethical research systems (Preethi Shivayogi, 2013). An injustice occurs when some benefit to which a patient is entitled is denied without good reason or when some burden is imposed unduly. There was not regard for any of these aspects in the Lacks case. As I stated before there was harm done to Mrs. Lacks and her family. They have yet to be given any justice, in the form of financial reciprocity or even acknowledgement of wrong doing. Lastly, they definitely did not respect Mrs. Lacks or her family.
There are many important factors to informed consent. Informed consent is thought to be the explanation of the purpose, benefits, risks and other study information necessary to allow the participants to make an informed and voluntary decision to participate in the clinical study. It also describes the obligation of the researcher to inform the patient about personal benefits and risks a client may face in study. Respect for persons requires that patients be given the opportunity to choose what shall or shall not happen to them. Without informed consent there can be no validity of a study. We as researchers or counselors are obligated to the three components of valid informed consent: disclosure, capacity and voluntariness. If a client is not informed by disclosure, capable of consent, or doing the research voluntarily is can not be marked as valid. I do not believe that she was able to truly consent due to her health and maybe even her education level. They did not take the time to find out or even try to find out if she was capable of consent. There was no regard for harm of the patient and she was part of a vulnerable population.
Vulnerable populations are to be handled with care. There are several definitions of vulnerable populations. They are disadvantaged clients of the community. They require the utmost care, specific considerations and protections in research. The vulnerable clients freedom and capability to protect one-self can be an issue. Decreased freewill can be an issue with clients such as prisoners, people in other institutions, like nursing homes or mental health facilities. They can have the inability to make informed choices. Vulnerable populations need attention during designing studies with unique enrollment considerations and quality examination measurements of overall safety approaches ensuing research (Preethi Shivayogi, 2013). It is of the utmost importance that we make sure that our clients fully understand what they are going to be participating in. What the harms might be, what the benefits might be, and how they have the right to quit the study at any time. They are not to be kept in the dark as Mrs. Lacks was. She had the right to know what was being done to her and what they would be doing with her cells.
In conclusion, it is in my opinion that Johns Hopkins University Hospital was ethically irresponsible in the case of Henrietta Lacks. She went to this institution for help and was taken advantage of and she was not given the respect that she deserved (Skloot, R. (2017). Her family suffered for many years with the knowledge that she was treated unfairly and this effected their wellbeing. They also were not financially compensated for the many millions of dollars that the researchers gained from her cells. John Hopkins still refuses to acknowledge or admit wrong doing to this day. This seems to me to be the ultimate sign of disrespect. This womens cells have saved many lives and has advanced research in so many ways. She and her family deserve to be recognized for their unmeasurable contribution to science. As for me as a counselor/researcher it puts ethics and guild lines in the forefront of my mind as the most important factor for any research ever undertaken.
References
- American Counseling Association. (2014). ACA code of ethics. Alexandria, VA: Author
- Skloot, R. (2017). The immortal life of Henrietta Lacks. Broadway Books.
- Retrieved from on 3/8/2019 https://voice.ons.org/stories/the-story-of-henrietta-lacks-sheds-light-on-ethical-considerations-in-genetic-testing
- Retrieved from on 3/10/2019 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3601707/
- Retrieved from on 3/14/2019 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4863255/
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