The most imminent SDOH within The Immortal Life of Henrietta Lacks is the issue of healthcare access and quality, more specifically its effect on marginalized communities. Henrietta Lacks, who was a poor black woman received care at Johns Hopkins Hospital, one of the few hospitals that would treat Black patients in the 1950s era. However, throughout this care, her experience was dictated by systemic inequalities, with situations such as not having informed consent when her cervical cells were taken for research and no opportunity to consent or be compensated for her cells use. This sheds light on a broader issue within the U.S. healthcare system, where Black people have not received respectful, equitable, and informed care.
While these disparities are something we wish to be of the past, they still exist today. Black Americans continue to receive unequal treatment in the healthcare setting. This disparity leads to poor health outcomes, leading to issues such as chronic illness and maternal mortality. For example, in Henrietta’s experience the lack of informed consent led to issues of medical mistrust, an ongoing issue in African American communities. Henrietta’s mistrust was justified in the history of unethical research and neglect.
The roots of health disparities affecting Black Americans stem from long history of systemic oppression, which began with slavery and continued through segregation. During slavey, Black people were frequently used for unethical medical experimentation without their consent. Throughout the 20th century, racism remained deeply embedded in healthcare through segregated medical facilities, discriminatory research practices, and limited access to adequate insurance and high-quality care. One of the most infamous examples is the Tuskegee Syphilis Study (1932-1972), where Black men were denied treatment in a government-run experiment, violating ethical standards and informed consent (CDC, 2021). These historic injustices have led to deep mistrust in the healthcare system and continue to contribute to significant health inequities today, such as elevated rates of chronic illness and reduced life expectancy among Black Americans.
Institutions like healthcare systems and educational structures play a huge role in causing these disparities. Medical educations have been known to exclude the contributions of people of color and underemphasized cultural humility, while healthcare systems often lack equitable care. Furthermore, the ongoing impact of structural racism in healthcare stems from policies of exclusionary systems that has historically denied Black communities’ fair access to things such as housing, education, and medical services. These deep-rooted inequities continue to cause disparities we see in health outcomes and access to care today (Baily, Feldman, & Bassett, 2021).
A theory that can be applied is the Intersectionality Theory. Using this theory helps us to understand Henrietta’s experiences as not just due to her race, but also her gender, socioeconomic status, and education level. These characteristics put her in a vulnerable position, increasing her chances of being exploited and neglected in medical settings. The intersectionality theory reminds us that the social determinants of health do not act individually but rather compound together to create bigger inequities in health outcomes.
Education is yet another social determinant of health displayed in The Immortal Life of Henrietta Lacks. The lack of access to education for Henrietta and her family negatively impacted their understanding of healthcare and patient autonomy. The minimal education Henrietta received led to her exploitation and limited ability to fully comprehend the decisions made regarding her body and healthcare. Sadly, Henriettas children also received very little education leading to challenges in navigating the healthcare system and advocating for themselves and their mother.
The educational disparities experienced by Henrietta and her family resulted in unequal healthcare access ultimately leading to health disparities. Due to the inadequate education, Henrietta and her family lacked the proper understanding of basic medical terminology, including the understanding of her treatment and the rights as patients. The knowledge gap led to the oppression of Henrietta as she suffered from the painful side effects of radium treatment and the exclusion of participation from her and her family regarding healthcare decisions over her body and cells. For many years, Henrietta’s family was unaware of Henrietta’s cells being taken and used in research all over the world, all while unable to afford basic healthcare themselves. This contrast highlights how marginalized and educationally disadvantaged groups experience lack of access to quality healthcare and information, lower quality of care, and risk of exploitation.
As a black woman raised in the rural south, Henrietta and her family were not the only ones who suffered the consequences of education systemic injustice. During the 1930’s, schools were still heavily segregated and lacked appropriate funding, “There were not as many public schools available for blacks. If a town did not have enough money for two separate schools, they built only one school – for white children. This was especially true in rural towns,” (Brooker, n.d.). Black children were often pulled out of school because they were needed on the farm (Brooker, n.d.), as education was seen as not necessary for African Americans. Disparity in education between blacks and whites still exists, “Nearly 70 years after the landmark ruling in Brown v. Board of Education that ended legal school segregation, substantial racial disparities in educational opportunity and attainment still exist,” (U.S. Department of Treasury, 2023) from significant gaps in reading and math scores, to research showing schools are still segregated by race and ethnicity (U.S. Department of Treasury 2023). African Americans continue to face the deep-rooted inequalities regarding education for African Americans, creating many disadvantages and a vulnerable community in society.
Educational systems and government policies are some of the institutions that influence the social determinant of health – education. Government policies and educational systems play a critical role in who has access to quality education and how those opportunities are distributed and funded. Education funding and curriculum standards are set by policymakers which can impact disparities based on race, geographical location, or income. With majority of government funding based on property taxes, “Local school funding is still primarily based on local property taxes and reflects large disparities in property values between wealthy and low-income communities,” (Gartner, 2023), schools are at risk of being underfunded in marginalized communities. These communities in turn lack resources, qualified teachers and curriculums, and overall lack of resources to ensure the success of students and their well-being. The affordability and accessibility of higher education also impacts oppressed communities and individuals, impacting their ability to further their knowledge and health literacy. The rural, impoverished Southern town Henrietta grew up in experienced the direct impacts of education funding policies leading to her lack of health literacy and advocacy.
The Life Course Theory applied to the social determinant of health – education illustrates how the lack of education Henrietta and her family experienced affected their long-term health, autonomy and well-being. Due to systemic racism and poverty in the South where Henrietta grew up, she received limited education resulting in her vulnerability and exploitation within the healthcare system and impacted her family’s generational trajectory. The Life Course Theory suggests the attainment of new cognitive abilities such as complex thinking, which can be obtained from receiving an education, during adolescence is a “crucial time for establishing health behaviors that affect health and well-being later in life,” (Jacob, n.d.) If Henrietta had greater health literacy and education, it may have prevented her from sending her daughter Elise away to an unethical institution where Elise later passed away from suggested abuse and neglect from the institution. In Deborah’s (Henrietta’s youngest daughter) case of receiving minimal education, she struggled to navigate the healthcare system after the passing of Henreitta due to her lack of health literacy. Henrietta’s other children were also victim to lack of healthcare access and understanding due to their limited education. The educational disadvantages experienced by the Lack’s family accumulated leading to other systemic barriers and impedes their ability for healthcare advocacy and literacy.