In human history, the quest of advancement through research has been both necessary and contentious. Research is essential to advancement, but it is often contentious since it dives into methods and approaches that society may find objectionable. The well-known HeLa case, made famous by Rebecca Skloot's book "The Immortal Life of Henrietta Lacks," attempts to portray some of the fundamental ethical dilemmas in scientific research. The Belmont report investigates ethical principles and their application to scientific research cases such as Henrietta Lacks'.
According to the Belmont report, ethical standards are the primary guides or prescriptions in the evaluation of activities. The principles will assist researchers in determining the ethical acceptance of their actions (National Institute of Health, 1979). The first principle requires respect for other persons. The principle requires the treatment of individuals as autonomous agents while protecting the individuals with diminished autonomy. Respecting other persons requires that the people’s opinions are respected and their choices accepted. The persons with diminished autonomy as a result of age or sickness should be protected. The individuals that cannot make sound and independent decisions deserve to be protected from activities that harm them. The second principle of beneficence requires that efforts have to be initiated to secure and improve the good beings of the research persons. To be beneficent, a research project has to prevent harm and result to more benefits to the persons. The benefit assessment can encompass the gain to the whole society and not just a single test subject. The final principle of justice governs the ethical viability of actions. Justice is attained if the benefits that are to be awarded to an individual are availed accordingly. The society through justice obtains fair distribution of the items they are entitled to through the principle of justice. The aspect of justice is needed to avoid the mistreatment of the minorities in the society. Justice ensures that an ethical research has its organization and results benefit the society equitably (National Institute of Health, 1979).
Potential Application of Ethical Principles on Henrietta’s Case
The Belmont report urges that the principles need to be applied by considering risk and benefit assessments, requiring an informed consent and proper selection of the research subjects (National Institute of Health, 1979). For Henrietta Lacks, the informed consent required that she should determine what could happen and what could not happen to her at John Hopkins Hospital. Henrietta was to be given enough information about the tissue collection and the intended use of her cells. Her knowledge of the collection was not going to affect the result of the research, and so the researchers did not have grounds to hold back the information from Henrietta or her family. The information on the collection should have been presented in an organized fashion to Henrietta and her family without complexities to the extent that a reasonable person will have comprehended. To respect Henrietta, the report considers that third parties such as her husband should have been informed to protect Henrietta from harm. The third party selected for Henrietta would have been one capable of understanding the matter of cell culture. In the end, the participation for Henrietta should have been voluntary without coercion or undue influence from the research parties. The researchers as per the Belmont report should have assessed the risks and benefits that emanated from the collection of Henrietta’s cells. The risks to Henrietta and her family should have been justified before the commencement of the research on her cells. The Lacks community should have also been afforded protection and their risks minimized. The selection of subjects for the research should have been respectful and justifiable (National Institute of Health, 1979). Henrietta should not have been selected based on her race nor her condition unless the study was restricted to cervical cancer patients. Henrietta was sick, and any research on her should have been designed to have a therapeutic component. The Family of Henrietta was also subject to a collection of cell samples (Skloot, 2010). The family was to be informed by John Hopkins Hospital on the reasons for collecting their tissue samples. As such, the descendants of Henrietta should have been informed of the HeLa cells and their existence before the collection. For the young children, the consent of the adult Lacks should have been sought before sample collection. Their selection as research subjects should have been justified by the researchers.
Actual Application of Ethical Principles on Henrietta’s Case
The actual occurrence for Henrietta and her family were opposed to the three ethical principles. The researchers failed to apply the key principles in making the sample selection choices of Henrietta and her family. Henrietta and her family did not provide consent for the collection of Henrietta’s cells nor did they allow her participation in the cell culture. The cells were part of Henrietta, and even after they became critical to the world of science, she was informed of nothing. I the aspect of providing consent, Henrietta’s husband, Day, was approached for the collection of the sample. Day claims that he denied them the mandate to harvest the tissues of her wife since he did not understand the hospital’s reasons (Skloot, 2010). The hospital showed a little respect when it continued to collect Henrietta’s cells despite being denied the authority by the husband. The Lacks family was also disrespected by the hospital when their cell samples were collected without being informed of the real reasons. The hospital was very vague and misleading as to the reasons they required the tissues from the Lack family. The hospital even failed to inform them of Henrietta’s cells (Skloot, 2010). The hospital did not assess the emotional risks the cell cultivation on Henrietta would have on the family. However, the benefits to the community were vast and even acknowledged by Henrietta’s daughter, Deborah. The justification of the selection of Henrietta as a study subject by Gey is debatable. On the one hand, Gey did not show any racial bias or gender bias in collecting samples for his culture. He was obtaining a sample from anyone and then tried to cultivate them. The justification of the selection is threatened since Henrietta was sick and was preyed upon by the researchers. Her cancer created an appropriate avenue for doctors to unjustly collect her tissue samples in the guise of it being a necessity for her improving.
Factors Influencing Henrietta’s Unethical Treatment
The factors of poverty, race, legal illiteracy and Henrietta’s cancer contributed to her unethical treatment. Henrietta was poor and therefore could not afford proper treatment and legal recourse on her cell use. Her husband and family lacked proper legal knowledge on such matters and were thus subject to unethical treatment (Skloot, 2010). Her cancer was also the reason Henrietta became easy prey for Gey and other researchers. Her desperate need for cure exposed Henrietta to the predatory and unethical treatment by John Hopkins Hospital. Furthermore, the race was critical in the failure of people to acknowledge and appreciate the true identity of Henrietta Lacks. She was constantly known by other names that masked her racial identity. Given the minority treatment of African Americans at Henrietta’s time, scientists and researchers ethically mistreated them such as in the Tuskegee Trials.
Privacy Issues
The Privacy aspect for the Lacks was initially adhered to since few media outlets disclosed Henrietta’s name on the grounds of privacy. However, privacy was a conflicting subject since Gey did use the privacy subject in failing to disclose the true source of HeLa cells including the Lacks family. Skloot identifies that the failure to disclose the name early protected the Lack’s family privacy but denied the family the chance to know the progress of their mother’s cells (Skloot, 2010). The privacy should have been observed to the public but not the family who had a right to be informed. Furthermore, the lack privacy was violated from the tissue collections and blood samples. The samples could disclose the genetic information on individuals which is a private matter. The release of Henrietta’s medical records was not a violation of privacy under HIPAA since the dead are not given a right to privacy (Skloot, 2010). The family, however, could have recourse since the release of the medical records was a violation of their privacy since it released their genetic information to the public.
Ownership of HeLa Cells
In legal terms, the person that owns the HeLa cell is Gey and not Henrietta nor her family. This is according to the Supreme Court of California ruling in the John Moore case (Skloot, 2010). According to the case, Henrietta no longer owned any tissue removed from her body even though it was without her consent. Gey was the owner of the cells since it was his innovations that led to the continued survival of the cells. Gey's experiment on culture gave him the rights over Henrietta’s cells since Henrietta no longer owned them and it was his creativity that the cells did not die like others. It can still be argued that the cells belong to the community since Gey the owner did not patent them and he gave them out freely without restriction. Hence if Gey did not claim possession, the cells belong to the public.
References
National Institutes of Health. (1979). The Belmont Report. Belmont Rep. Ethical Princ. Guidel. Prot. Hum. Subj. Res, 4-6.
Rebecca Skloot. (2010). The immortal life of Henrietta Lacks. Crown.
