Abstract
The 10th-year anniversary of the publication of Rebecca Skloot’s book about the medical exploitation of Henrietta Lacks is cause for a review in Affilia: Journal of Women and Social Work because of the salience of this case study’s illustrative power. A black woman with little money and a dangerous version of cervical cancer became the object of an ambitious white medical researcher’s gaze. The narrative of her life and of the uses made of her cancer cells after her death by academic and research doctors is a tale of utter objectification.
Skloots’ book provides a multifaceted and in-depth historical account of the life of Henrietta Lacks and the story behind how her cancer cells became one of the most important vehicles for advancing contemporary medicine. Henrietta Lacks was a poor African American woman from Roanoke, VA, who died from an aggressive form of cervical cancer at the age of 31 while under the care of Dr. Gey, a white medical doctor at Johns Hopkins University Hospital. While Dr. Gey expressed no ill intentions for Henrietta, his fanatical dedication to advancing scientific knowledge drove him to remove a portion of the cancerous tumor cells from Henrietta’s cervix without her prior consent in order to aid his own scientific endeavors.
The book highlights how African Americans, and particularly African American women, were treated in medical settings in the 1950s in the “colored section” of the Johns Hopkins University Hospital. Medical terminology and procedures were not explained to patients or their family members by medical staff under the assumption that African Americans could not understand or would become upset—thereby frustrating the medical research process. Even though Henrietta knowingly agreed to receive cancer treatment with radon, she was never informed that such treatment would render her infertile months before her ultimate death. This failure on Dr. Gey's part to inform Henrietta was a form of dehumanization. His inability to link Henrietta’s cancer with her humanity was a major theme throughout the biographical account that the author, Rebecca Skloot, offers in her attempts to rehumanize Ms. Henrietta Lacks posthumously by reattaching the person to scientific facts and historical contexts.
Despite her passing in 1951, Henrietta’s cells, known as “HeLa” to the scientific community, are alive today in laboratories across the globe. Until this book was published, the person from whom these revolutionary cells came was unknown by the medical community and general public. While the degree of detail in this book is overwhelming at times, the facts help to elucidate the narrative of a woman, transforming her cells from an anonymous enigma to biological residue once possessed by an affectionate, amiable, and gentle human being.
This book unites historical events with current research practices by guiding the readers through Skloot’s journey to discover the woman behind HeLa. The narrative illuminates the intricacies of how HeLa cells have impacted human beings in the present. Because of HeLa, scientists have developed the polio vaccine, made breakthroughs in understanding the human immunodeficiency virus, and conducted early human genome mapping. However, despite this major impact, Henrietta’s family continued to live in poor health and received no compensation for the breakthroughs that Henrietta’s cells made possible. The narrative sheds light on the life of Henrietta’s oldest daughter, Deborah, and the scientific implications of the immortal nature of HeLa cells and ethical failures underlying HeLa’s discovery.
Skloot not only disentangles who Henrietta was by living with some of Henrietta’s children, but also by interviewing Henrietta’s family friends, acquaintances, and enemies. The author excavates the family’s emotions and history in the multiple realms of criminal justice, mental health, and education. In so doing, this reader wonders, did she use questionable research methods? Was the information gathered in a respectful manner? Or did Skloot extract information from Lacks’ family and the institutions with which they were involved in a manner that paralleled some of the tactics deployed by Dr. Gey? The author relentlessly penetrates the lives of Henrietta’s family members to uncover multiple details, adding insult to the original injury.
The book demonstrates how research practices exploit vulnerable populations, including women, people of color, and individuals who are uneducated, poor, or incarcerated. For Henrietta, who was not educated beyond elementary school, the process of obtaining her “informed consent” included providing misinformation, omitting potential risks of treatment, documenting incompletely the medical processes, and mishandling the cells obtained from her in person. This mismanagement of HeLa ultimately resulted in cross-contamination with other cells over time, which further dehumanized Ms. Henrietta Lacks through the lack of respect and care her cells were given even after they were found to be medically useful.
Important lessons for conducting ethical research with human subjects can be drawn for social workers from studying this book. Vigilant data collection and management of information disclosed by the people who agree to participate in research are at the core of our responsibilities. Preserving the mind-set of viewing individuals as holistic humans rather than as research subjects with which to advance our careers is pivotal. Reading The Immortal Life of Henrietta Lacks is an opportunity for social work researchers and students to glean significant insights into conducting person-centered research and in developing a renewed sense of awareness when conducting research with vulnerable populations.
