The Quiet Resilience of Henrietta Lacks: A Legacy Beyond HeLa

Published in Politics and Government on Thursday, August 21st 2025 at 2:59 GMT by WPRI Providence
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Henrietta Lacks’ story is one that has resonated deeply with the public consciousness in recent years, largely due to the renewed attention sparked by Rebecca Skloot's 2010 book, The Immortal Life of Henrietta Lacks, and the subsequent HBO film. While many are familiar with the basic premise – her cells, taken without consent, became a revolutionary tool for medical research – the full scope of her story, the ongoing ethical considerations, and the profound impact on her family remain complex and deserve continued exploration. This article delves into the life of Henrietta Lacks, the circumstances surrounding the acquisition of her cells (now known as “HeLa”), and the long journey towards justice and recognition for her legacy.

Born Loretta Pleasant in 1920 in Clover, Virginia, Henrietta’s early life was marked by hardship and rural poverty. She married a cousin, David Lacks, and together they moved to Baltimore, Maryland, seeking better opportunities. There, she worked as a tobacco stripper and laundrywoman, eventually giving birth to five children. In 1951, at the age of 31, Henrietta sought treatment for an aggressive cervical cancer at Johns Hopkins Hospital, then one of the few hospitals in the area that treated Black patients.

During her biopsies, tissue samples were taken without her or her husband’s informed consent – a standard practice at the time, though ethically questionable even then. These samples were given to Dr. George Gey, a researcher attempting to cultivate an “immortal” cell line, one that could survive and reproduce outside the human body. Henrietta's cells proved remarkably resilient; they thrived in the lab, unlike previous attempts which had failed. They became known as HeLa cells – a combination of the first two letters of her first name and last name.

What followed was an unprecedented scientific breakthrough. HeLa cells were shared with researchers worldwide, contributing to groundbreaking advancements in polio vaccines, cancer research, genetics, and numerous other fields. The cell line’s rapid proliferation and unique characteristics made it invaluable, yet Henrietta Lacks and her family remained unaware of the immense contribution being made from her tissue for decades.

The lack of transparency surrounding HeLa cells created a profound ethical dilemma. While researchers benefited immensely, the Lacks family faced financial struggles and were often unable to afford medical care themselves. They were kept in the dark about the source of these cells, leading to feelings of exploitation and betrayal. The situation was compounded by the fact that Henrietta’s cancer diagnosis and treatment records were also inaccessible to her family without permission from Johns Hopkins.

The truth began to surface in 1973 when a newspaper article revealed that Henrietta's cells were still being used for research. This sparked outrage within the Black community and prompted the Lacks family to demand answers. The revelation was deeply unsettling, forcing them to confront the reality of their mother’s legacy – a scientific marvel built upon her unwitting sacrifice.

The ensuing years saw a protracted struggle for recognition and compensation. Initially, Johns Hopkins maintained its position that obtaining consent wasn't standard practice at the time. However, public pressure and legal challenges eventually led to significant changes. In 2013, an agreement was reached between Johns Hopkins University and the Lacks family, granting them access to Henrietta’s medical records and establishing a review board to oversee research involving HeLa cells. This marked a crucial step towards acknowledging the injustice and ensuring greater ethical oversight in future research endeavors.

Furthermore, in recent years, efforts have been made to recognize Henrietta Lacks' contribution more formally. In 2018, she was posthumously inducted into the National Academy of Sciences – a significant honor for someone whose cells had revolutionized scientific understanding. The NIH also announced that HeLa cell genomic data would be released publicly, but with restrictions to protect the privacy of the Lacks family. This delicate balance aims to promote scientific progress while respecting the family’s wishes.

Today, Henrietta Lacks' story serves as a powerful reminder of the importance of informed consent, ethical research practices, and the need for transparency in medical science. It highlights the historical exploitation faced by marginalized communities within the healthcare system and underscores the ongoing fight for equity and justice. The legacy of HeLa cells continues to evolve, prompting critical conversations about ownership, privacy, and the responsibility that comes with scientific advancement. The Lacks family’s journey towards recognition is a testament to their resilience and unwavering determination to ensure that Henrietta's story – and her contribution to science – is finally told with honesty and respect. It remains an essential lesson for researchers, institutions, and society as a whole: progress must never come at the expense of human dignity and ethical responsibility.

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The Quiet Resilience of Henrietta Lacks: A Legacy Beyond HeLa