A case of medical ethics: henrietta lacks' cells sampled without consent led to medical discoveries

The Immortal Life of Henrietta Lacks

Summary

The Immortal Life of Henrietta Lacks details the life of unwitting tissue donor Henrietta Lacks and the ongoing influence of her cancer cell line HeLa. The book is written from the perspective of author Rebecca Skloot as she pursues the untold story of Lacks family through interviews with living family members.

Henrietta Lacks, the granddaughter of African-American slaves, was treated for cervical cancer at Johns Hopkins Hospital in 1951. Without her consent, samples of her cervix were removed and cultured as a cell line, HeLa. The immortal HeLa cells allowed incredible advancements in medicine, including the development of a polio vaccine.

Meanwhile, Henrietta had died from cancer, leaving behind five children. The family lived in poverty, some turning to criminal activity and serving jail time. Only in 1973 did the Lackses even learn about the HeLa cells, by chance through the newspaper. Their lack of literacy and science education made it difficult for them to understand how their mother had spawned a cell line. They felt they had been betrayed by the doctors.

By the 1990s, Henrietta began to receive public recognition for her contribution to science. Deborah, the youngest daughter, knew little about her mother. She was traumatized by interviews with researchers and journalists whom she did not trust. Rebecca Skloot was able to gain Deborah’s trust and interview her extensively. Together, Rebecca and Deborah traveled to research labs, Henrietta’s hometown, and to Lacks relatives to uncover Henrietta’s story. Deborah was at last able to know her mother through learning about the Hela cells.

Application

The Immortal Life of Henrietta Lacks makes cell biology accessible to a wider audience through an engrossing and emotional narrative. The book could serve as a novel study in a grade 11 or 12 Biology Genetics unit. It brings a unique, humanized perspective to biology. While textbooks characterize cells as generic and systematic entities, The Immortal Life of Henrietta Lacks makes it personal. A HeLa cell is not just any cell; it came from this woman with a family with stories to tell.

A central teachable message of the book is that science is not pure and objective. Science is a historically racist and classist institution. African-Americans in particular have been deceived by doctors and deprived of proper treatment, with the Tuskeegee syphilis experiment a prime example. A biology class could engage in debates regarding the decisions made by researchers in cases such as Tuskeegee and HeLa. Students could prepare for the debate by considering the impact on individual autonomy, health, and the advancement of science.

Tissue donation is an ethical issue which pulls between utilitarianism and libertarianism. The utilitarian perspective argues that donated human tissues play an integral role in research which benefits all, so researchers should get to study all tissues once they leave the patient’s body. Libertarianism argues against this, prioritizing the rights of the individual even if it means the loss of a tissue sample that could revolutionize medicine. To analyze this issue, students could create a proposal for a national tissue donation policy. The proposal would include considerations for individual rights, the greater good of society, and a strategy for informing the public about the implications of tissue donation. A student could share their proposal with peers who take on the roles of patients, family members, and researchers. The peers would respond in character with reactions to the policy.

The Immortal Life of Henrietta Lacks is highly accessible for high school students. The book assumes little background terminology, and is available as an audiobook. The book’s website hosts teacher resources included guided reading and discussion questions, sample activities, and an online Jeopardy-style review game.