In spite of research indicating the methods helping to reduce inequality in healthcare, the problem of health disparities is still recognized as a critical question. In her award-winning book titled The Immortal Life of Henrietta Lacks, Skloot (2010) tells the story of a financially disadvantaged African-American cervical cancer patient whose cells were used for scientific purposes without her and her family’s consent. The author shares the results of her thorough research that partially support the theories of disparity, focusing on race-based social division, resource deprivation, and the link between motivation and identity while also highlighting certain ethical issues evident in the case.
The first factor that allows making connections between the story and modern theories explaining the sources of health disparities is Henrietta’s access to medical resources based on her financial situation and race. As a poor woman, Henrietta Lacks did not have many options when finding out about her health condition. In 1950, she and her husband visited their local doctor, and they were referred to the John Hopkins clinic – one of the few hospitals that served financially underprivileged people, the majority of which were black (Skloot, 2010). This fact aligns with the theories of health disparities centered on the social division on the basis of financial resources often related to ethnicity. According to Arcaya, Arcaya, and Subramanian (2015), economic stratification heavily impacts U.S. citizens’ access to medical services. In the middle of the twentieth century, this division was even more obvious, and the woman who was constantly bleeding and had severe pain had to travel a long way to visit the hospital and get the right diagnosis (Skloot, 2010). Taking this fact into consideration, it can be said that health disparities related to economic class impacted the woman’s opportunity to get timely medical services.
In addition to the financial component of discrimination in healthcare services, the story of Henrietta problematizes race-based differences in access to timely help. As is stated by Skloot (2010) in her non-fiction book, in the era of the so-called Jim Crow laws, racial segregation was a common practice in healthcare institutions. Henrietta needed to get the correct diagnosis and start treatment as soon as possible at the time when it was normal for the medical staff in some hospitals to deny aid to non-white patients even if they needed urgent and life-saving surgical interventions (Skloot, 2010). To some extent, this example illustrates and supports the resource deprivation theory stating that white and non-white populations have unequal access to important resources, which explains the existence of health disparities (Arcaya et al., 2015). Therefore, some facts from the book illustrating segregation in healthcare support the theories of health disparities, emphasizing the role of race in access to resources.
The very fact that Henrietta neglected her condition until it was too late can be analyzed with reference to the identity-based motivational model proposed by Richman, Blodorn, and Major (2016). According to it, the levels of perceived health disparities have an impact on people’s willingness to avoid unhealthy practices and behaviors (Richman et al., 2016). Henrietta started noticing alarming symptoms such as pain, bleeding, and lumps a few months before going to the doctor, but she decided to seek medical help only when the symptoms aggravated (Skloot, 2010). This example is indicative of self-depreciation and a tendency to neglect physical difficulties, which can be related to being a member of a segregated group not welcomed in white-only hospitals. It also demonstrates that disparities in healthcare can be unobvious, thus changing people’s attitudes to the problem and preventing them from oversimplifying the structure of discrimination.
The content of the book also allows examining ethical issues in healthcare that influence patient outcomes and satisfaction with care. Firstly, the use of Henrietta’s cells for research purposes without her consent is considered an ethical violation, and Skloot (2010) notes this fact in her work. She states that there are multiple guidelines and ethical codes that emphasize the importance of obtaining informed consent to such manipulations. However, as explained by Skloot (2010), ethical codes were not established as law, and it was thus difficult for an African-American woman to take the issue to court due to legal and social disparities. Secondly, the author notes that human tissue research, in general, is considered ethically dubious, and there are many scholars who are against it for ideological reasons (Skloot, 2010). Medical professionals involved in the treatment of Henrietta failed to comply with ethical requirements associated with this type of research and acknowledge the moral side of the situation, which makes this case an illustration of ethical concerns evident in healthcare.
The topic of ethics in the book is also related to the theme of race and the inequalities suffered by Henrietta. Delayed and denied care provision as a result of racial discrimination were prevalent ethical issues at the time, and in some cases, they still persist in contemporary medicine. Skloot (2010) shows the impact of discrimination on the patient in great detail throughout the book, thus drawing attention to the ethical side of the situation. For instance, the patient’s distress and impaired health as a result of poor access to and quality of healthcare provided highlight that ethical violations pertaining to healthcare impact both mental and physical health outcomes.
Concerning the advantages of the book, the work is full of facts that allow making conclusions concerning the character of health disparities in the twentieth century when hospital segregation on the basis of race was an acceptable practice. Moreover, the book is worth reading due to the quality of research conducted by Skloot (2010). She presents the facts of Henrietta’s life reported by her grandchildren and the analysis of the available medical records. In addition to that, the author thoroughly documents all interviews and provides the reader with an opportunity to analyze different perspectives on the story and the ethical appropriateness of using cancer tissues without informing patients and their family members. Judging from the book and the way the author presents her findings, she tries to be impartial and avoids using emotional reasoning. As for potential shortcomings, the author’s interviews with Henrietta’s relatives can sometimes be the source of incomplete or inaccurate information since these people present a biased party and human memory is not reliable in some cases.
To sum up, the book by Rebecca Skloot sheds light on numerous problems in medical ethics and disparity research. Particular facts documented by the author illustrate the presence of race-based inequalities highlighted in health disparity theories that emphasize social stratification and minorities’ access to resources. The author also highlights the ethical environment surrounding the case, which allows for a detailed exploration of Henrietta’s story from the perspective of both research and ethics.
Arcaya, M. C., Arcaya, A. L., & Subramanian, S. V. (2015). Inequalities in health: Definitions, concepts, and theories. Global Health Action, 8(1), 1-12.
Richman, L. S., Blodorn, A., & Major, B. (2016). An identity-based motivational model of the effects of perceived discrimination on health-related behaviors. Group Processes & Intergroup Relations, 19(4), 415-425.
Skloot, R. (2010). The immortal life of Henrietta Lacks. New York, NY: Crown Publishers.