Henrietta Lacks: Ethics and Legacy

Rebecca Skloot’s award-winning non-fiction book, "The Immortal Life of Henrietta Lacks," published in 2010, brought to light a story that had long been overlooked but is crucial to understanding the intersection of ethics, race, and medical science. The book won numerous accolades for its meticulous research and compelling narrative, which unveiled the life of Henrietta Lacks, a poor African American woman whose cells—taken without her consent—became one of the most important tools in modern medicine. These cells, known as HeLa cells, were pivotal in countless medical breakthroughs, generating immense profits.

Yet, Henrietta and her family never received any compensation. This essay argues that the Lacks family deserves financial restitution, not only for the unauthorized use of Henrietta’s cells but also for the ethical violations that followed.

The Case for Compensation

At the core of this argument is the undeniable fact that HeLa cells are fundamentally Henrietta’s cells, derived directly from her body. It is essential to recognize that without Henrietta, the scientific advancements achieved through HeLa cells would not have been possible. These cells have contributed to critical medical research, including the development of the polio vaccine, cancer treatments, and even the mapping of human genes. Despite these monumental achievements, neither Henrietta nor her descendants received any financial benefits. The Lacks family has endured generations of poverty, while industries have profited enormously from the cells. In a fair society, it is only logical and just that they receive compensation, as the wealth generated has a direct connection to their relative.

Ethical Violations and Historical Context

The extraction of Henrietta’s cells was done without her informed consent, a practice that would be deemed unethical and likely illegal today. During her visit to Johns Hopkins Hospital in 1951 for cancer treatment, doctors removed cells from her cervix without informing her of their intentions or securing her permission. Skloot describes this invasive procedure, writing, “But first—though no one had told Henrietta that TeLinde was collecting samples or asked if she wanted to be a donor—Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue” (Skloot, p. 33). This act exemplifies a gross violation of medical ethics, exacerbated by the racial and socio-economic dynamics of the time. African Americans were systematically marginalized, and their rights were often disregarded, particularly in medical settings, where questioning a white doctor’s authority was virtually unheard of. Henrietta Lacks, as a black woman in 1950s Baltimore, was subjected to this systemic injustice.

Continued Exploitation and Deceit

The unethical treatment did not end with Henrietta’s death. Years later, medical researchers sought further biological samples from her family without proper disclosure. In a conversation with Skloot, Bobbette, a member of the Lacks family, expressed the family’s frustration: “What really would upset Henrietta is the fact that Dr. Gey never told the family anything—we didn’t know nothing about those cells and he didn’t care” (Skloot, p. 169). The family remained in the dark about the true nature and significance of the HeLa cells. Researchers continued to exploit the Lacks family’s lack of knowledge by taking blood samples under false pretenses, leaving them confused and worried, as Skloot recounts: “They truly had no idea what was going on, and they really wanted to understand. But doctors just took blood samples without explaining anything and left the family worrying” (Skloot, p. 192). This ongoing deceit highlights a pattern of exploitation and unethical behavior that persisted for decades.

Conclusion

The story of Henrietta Lacks and her family is a poignant reminder of the ethical lapses that can occur when medical research prioritizes progress over people. The HeLa cells, while invaluable to scientific discovery, were obtained through methods that disregarded basic human rights and dignity. The Lacks family deserves compensation not only for the immense contributions that Henrietta’s cells have made to medical science but also as reparations for the injustice and exploitation they endured. Providing financial restitution to the Lacks family would be a significant step toward rectifying a historical wrong and honoring Henrietta’s unintentional yet profound legacy. In the broader context, this case underscores the need for ethical standards and transparency in medical research, ensuring that no individual is exploited in the pursuit of scientific advancement.

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