The Ethical Dilemmas Explored in The Immortal Life of Henrietta Lacks
This article examines the ethical dilemmas highlighted in The Immortal Life of Henrietta Lacks, a book that delves into the life of Henrietta Lacks, the woman whose cells were taken without her consent and used for groundbreaking medical research. The article explores issues of informed consent, exploitation, and the intersection of race and medical ethics. Through detailed analysis and discussion, the piece offers insights into the ongoing ethical challenges in biomedical research.

Rebecca Skloot’s The Immortal Life of Henrietta Lacks is a poignant exploration of the life of Henrietta Lacks, an African American woman whose cells were taken without her knowledge or consent in 1951. These cells, known as HeLa cells, became one of the most important tools in modern medicine, contributing to countless scientific breakthroughs, from the development of the polio vaccine to advancements in cancer research. However, the story of Henrietta Lacks raises significant ethical questions that continue to resonate in the field of biomedical research today. This article delves into the ethical dilemmas presented in the book, including issues of informed consent, exploitation, and the intersection of race and medical ethics.
Informed Consent: A Fundamental Ethical Issue
One of the most pressing ethical issues in The Immortal Life of Henrietta Lacks is the lack of informed consent. In 1951, when Henrietta Lacks was treated at Johns Hopkins Hospital for cervical cancer, a sample of her tumor cells was taken without her knowledge or permission. These cells were then cultured and became the first immortal human cell line, known as HeLa cells.
1. The Historical Context of Consent
In the early 1950s, the concept of informed consent as we understand it today was not well-established. Patients, especially those from marginalized communities, were often subjected to medical procedures without being fully informed of what was happening or why. This was particularly true for African American patients, who were frequently treated as subjects for experimentation rather than individuals with rights.
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The Legacy of Informed Consent:
The case of Henrietta Lacks highlights the evolution of informed consent in medical practice. It wasn’t until the 1970s, following the revelations of the Tuskegee Syphilis Study and other unethical research practices, that the United States began to enforce stricter regulations requiring informed consent for medical procedures and research involving human subjects. Today, informed consent is a cornerstone of ethical medical practice, ensuring that patients have autonomy over their bodies and the treatments they receive. -
Ongoing Challenges:
Despite the progress made since Henrietta Lacks’ time, informed consent remains a complex issue in modern medicine, particularly in the context of genetic research and biobanking. The case raises questions about whether patients fully understand the implications of consenting to have their biological materials used for research and whether they are adequately informed about how their materials might be used in the future.
2. Consent and the Use of Biological Materials
The case of HeLa cells also raises ethical questions about the use of biological materials in research. While Henrietta Lacks was unaware that her cells had been taken, the fact that they were used so extensively in research without her consent or that of her family brings up issues of ownership and control over one’s biological materials.
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Ownership of Cells and Tissues:
The question of who owns biological materials taken from a patient is still debated today. In the case of HeLa cells, the Lacks family did not receive any financial compensation or recognition for the use of Henrietta’s cells, despite the fact that they contributed to research worth billions of dollars. This has led to discussions about whether individuals should have the right to control how their cells and tissues are used and whether they should be entitled to share in the profits generated from their use. -
Ethical Considerations in Research:
Modern ethical guidelines emphasize the importance of obtaining consent not just for the initial use of biological materials but also for future research that may be conducted with those materials. However, the extent to which this consent is truly informed is still a matter of debate, particularly as research becomes increasingly complex and involves technologies like genetic editing and data sharing.
Exploitation and the Intersection of Race and Medicine
Another critical ethical dilemma highlighted in The Immortal Life of Henrietta Lacks is the exploitation of marginalized communities in medical research. Henrietta Lacks was a poor African American woman, and her story is emblematic of the broader history of exploitation of African Americans in the medical field.
1. The Exploitation of African Americans in Medical Research
The use of Henrietta Lacks’ cells without her consent is part of a long history of medical exploitation of African Americans, from the unethical surgeries performed by Dr. J. Marion Sims, known as the “father of modern gynecology,” to the infamous Tuskegee Syphilis Study, where African American men were deliberately left untreated for syphilis so that researchers could study the progression of the disease.
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Racial Disparities in Healthcare:
The story of Henrietta Lacks sheds light on the broader issue of racial disparities in healthcare, both in the past and today. African Americans have historically been subjected to lower standards of care and were often used as subjects in medical experiments without their consent. This exploitation was justified by racist beliefs that African Americans were biologically different and could endure more pain or were less deserving of ethical treatment. -
Impact on Trust in Medicine:
The legacy of exploitation has had a lasting impact on the relationship between African American communities and the medical establishment. Mistrust of medical institutions persists today, contributing to disparities in healthcare access and outcomes. The case of Henrietta Lacks serves as a powerful reminder of the need for medical professionals to build trust with marginalized communities by ensuring that all patients are treated with respect and dignity.
2. Modern-Day Implications
The ethical issues raised by the exploitation of Henrietta Lacks continue to resonate in contemporary discussions about race and medicine. Today, there is greater awareness of the need to protect vulnerable populations in medical research, but challenges remain.
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Ethical Research Practices:
Modern research ethics guidelines, such as the Belmont Report, emphasize the importance of respect for persons, beneficence, and justice in medical research. These principles are designed to protect vulnerable populations from exploitation and ensure that the benefits of research are distributed fairly. However, there are ongoing concerns about whether these guidelines are always followed in practice, particularly in research conducted in low-income countries or with marginalized communities. -
Addressing Health Disparities:
The story of Henrietta Lacks also highlights the importance of addressing health disparities in medical research and healthcare delivery. Researchers and healthcare providers must be mindful of the social and historical context in which they work and strive to ensure that all patients, regardless of race or socioeconomic status, receive ethical and equitable care.
The Legacy of Henrietta Lacks: Balancing Scientific Progress with Ethical Responsibility
The contributions of HeLa cells to medical science are undeniable. They have played a crucial role in countless scientific breakthroughs, including the development of vaccines, cancer treatments, and in vitro fertilization techniques. However, the story of Henrietta Lacks raises important questions about how scientific progress is achieved and at what cost.
1. Recognizing Contributions and Righting Historical Wrongs
In recent years, there has been a growing recognition of the contributions of Henrietta Lacks and her family. In 2010, Johns Hopkins University, where Henrietta was treated, held a symposium to honor her legacy, and the National Institutes of Health (NIH) established the Henrietta Lacks Initiative to ensure that her contributions are remembered and that her family’s wishes are respected.
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Ethical Recognition and Compensation:
The Lacks family has also been involved in discussions about how to right the wrongs of the past. In 2013, the NIH reached an agreement with the Lacks family to give them some control over access to the HeLa genome, acknowledging the importance of their consent in future research involving Henrietta’s cells. This agreement represents a step toward addressing the ethical issues raised by the use of HeLa cells and ensuring that the family is recognized for their contributions to science. -
Educational Efforts:
The story of Henrietta Lacks is now included in many medical ethics curricula, serving as a case study in the importance of informed consent, ethical research practices, and the need to protect vulnerable populations. By educating future generations of healthcare professionals about the ethical dilemmas highlighted in The Immortal Life of Henrietta Lacks, the medical community can work toward a more just and equitable future.
Curated List of Online Resources
For readers interested in further exploring the ethical issues discussed in this article, the following resources provide valuable insights and information:
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The Belmont Report:
This foundational document outlines ethical principles and guidelines for research involving human subjects, with a focus on respect for persons, beneficence, and justice. Link to Belmont Report -
National Institutes of Health (NIH) - Henrietta Lacks Initiative:
The NIH provides information about the Henrietta Lacks Initiative, which seeks to honor her legacy and ensure that her contributions to science are recognized. Link to NIH -
Johns Hopkins Medicine - The Legacy of Henrietta Lacks:
Johns Hopkins Medicine
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