Henrietta Lacks, a Black woman, unknowingly contributed cells that became one of the most significant tools in medical research. Her “immortal” HeLa cells have been instrumental in countless scientific advancements, including the development of vaccines and cancer treatments. This scientific legacy is linked with ethical questions surrounding consent, exploitation, and privacy. Her story highlights the interplay between scientific progress and human rights, leading to a re-evaluation of ethical standards in biomedical research.
The Unconsented Origin of HeLa Cells
Henrietta Lacks, a tobacco farmer from southern Virginia, sought treatment at Johns Hopkins Hospital in Baltimore, Maryland, in 1951. She presented with abnormal bleeding and was diagnosed with aggressive cervical cancer. During her treatment, tissue samples were taken from her cervix without her knowledge or consent. This practice was common at the time, as biological materials were often used for research without explicit permission.
Dr. George Gey, a researcher at Johns Hopkins, had long sought to cultivate immortal human cells. While previous samples from other patients quickly perished, Lacks’s cancerous cells exhibited an unprecedented ability to thrive and reproduce outside the human body. These cells were named HeLa, from the first two letters of Henrietta Lacks’s first and last names. Henrietta Lacks died on October 4, 1951, but her cells formed the first immortal human cell line.
Exploitation and Lack of Compensation
HeLa cells became an indispensable resource for the scientific community. They were distributed globally, enabling breakthroughs such as the development of the polio vaccine, advancements in cancer, AIDS, and gene mapping. Researchers used HeLa cells to study the effects of zero gravity in space and to test human sensitivity to various products. Over 50 million metric tons of HeLa cells have been produced and used in more than 75,000 studies, contributing to a multi-billion dollar industry.
Despite the scientific and commercial success generated from her cells, Henrietta Lacks’s family remained unaware of their existence and widespread use for over two decades. The Lacks family, facing financial hardship and lacking adequate healthcare, received no compensation from the profits derived from HeLa cells. This highlighted ethical questions about commercializing biological material obtained without consent. In 2023, the Lacks estate reached a confidential settlement with Thermo Fisher Scientific, a biotechnology company for profiting from HeLa cells.
Privacy and Genetic Information Concerns
The Lacks family first learned about the HeLa cells in the 1970s, when scientists began contacting them for blood samples for research related to the cell line. This caused distress and confusion for the family, who did not understand how Henrietta’s cells could still be alive or used. Further privacy concerns arose when scientists published the full genome sequence of HeLa cells in 2013 without the family’s consent. This publication revealed genetic information linked to Henrietta Lacks’s living descendants, raising fears about potential discrimination in areas like insurance or employment.
The release of this genetic data highlighted the ethical dilemma of balancing scientific transparency with individual and family privacy rights. In response to the family’s concerns, the published genome data was removed from public access. This prompted the National Institutes of Health (NIH) to engage with the Lacks family, leading to an agreement for controlled access to HeLa cell genomic data. Family representatives now participate in the review process for research proposals.
Transforming Research Ethics: The HeLa Legacy
The ethical issues surrounding Henrietta Lacks and her cells influenced the development of modern bioethics and research regulations. The Lacks case, alongside other instances of research misconduct, contributed to the establishment of informed consent as a requirement in medical research. This led to the passage of the National Research Act of 1974, which mandated the creation of Institutional Review Boards (IRBs) to protect human subjects in research. IRBs review and approve research involving human participants to ensure ethical standards and safeguard rights.
HeLa cells continue to fuel ethical debates concerning the ownership of biological samples, genetic privacy, and equitable benefit-sharing from scientific discoveries. The Lacks family has taken an active role in advocating for ethical research practices, with members serving on the NIH HeLa Genome Data Access Working Group. Their involvement ensures future research involving HeLa cells is conducted respectfully and transparently, emphasizing human dignity in scientific advancement. The revised Common Rule, a federal policy on human subjects protection, emphasizes informed consent, including disclosures about potential commercial profit and genetic information sharing.