The story of Henrietta Lacks is central to modern bioethics, representing a conflict between scientific advancement and individual rights. In 1951, Lacks was a patient at Johns Hopkins Hospital when a sample of her cervical cancer cells was taken without her knowledge or consent. These cells, named HeLa, were the first human cell line capable of growing indefinitely in a laboratory setting. HeLa became an invaluable tool for global biomedical research. The unauthorized use and subsequent commercialization of the HeLa line established a moral dilemma that shapes discussions around patient autonomy, privacy, and research regulation today.
The Unauthorized Acquisition of HeLa Cells
Henrietta Lacks sought treatment at Johns Hopkins Hospital in 1951 for an aggressive form of cervical cancer. During her examination and radium treatment, a surgeon took two tissue samples from her cervix—one healthy and one cancerous. This action was taken without her knowledge, which was common practice for obtaining tissues excised during clinical procedures in that era.
The samples were immediately transferred to the tissue culture research laboratory of Dr. George Gey. Gey and his team had spent years attempting to cultivate a continuously dividing human cell line, a feat no one had yet achieved. They quickly realized that Lacks’ cancer cells were multiplying at an unprecedented rate and could survive indefinitely in culture media.
Gey named this cell line “HeLa,” using the first two letters of Henrietta Lacks’ first and last names. The discovery was rapidly shared with researchers across the world, often for free or minimal cost. Within months, HeLa cells were being mass-produced and distributed, contributing to countless scientific breakthroughs while Lacks and her family remained unaware of their existence.
Fundamental Violations of Patient Autonomy and Privacy
The acquisition of Henrietta Lacks’ cells violated her patient autonomy, which is the right to make informed decisions about one’s own body and medical care. Informed consent requires that a patient understand the nature, risks, and purpose of a procedure, especially when tissue is taken for research. Lacks was never given this information, denying her the ability to choose what happened to her biological material.
This ethical failure was compounded by a violation of privacy decades later when researchers published portions of her medical records and the family’s genetic information without permission. The commercialization of the HeLa cell line further highlighted the breach, as companies made billions of dollars from research enabled by the cells. Neither Lacks nor her family received any financial compensation or recognition for this contribution.
The context of the time, where Lacks, a Black woman, was treated at a segregated hospital, is inseparable from the ethical failure. Research practices in the 1950s often exploited marginalized communities, treating their tissues as resources for scientific progress without respect for their rights. The lack of consent and profiting from her biological material exemplify a historical pattern of inequity within the medical system. The 1990 Moore v. Regents of the University of California case further complicated the issue by ruling that discarded tissue is not the patient’s property, limiting legal grounds for financial claims.
Institutional Review Boards and Research Governance
The controversies surrounding the HeLa cell line and revelations of unethical research like the Tuskegee Study catalyzed major systemic reform in research oversight. This led to the National Research Act of 1974, which mandated regulations for the protection of human subjects. The resulting Belmont Report of 1979 outlined three core ethical principles: respect for persons, beneficence, and justice.
These principles formed the basis for the Federal Policy for the Protection of Human Subjects, known as the Common Rule, which governs federally funded research today. The Common Rule requires that all institutions conducting human-subjects research create an Institutional Review Board (IRB). An IRB is an administrative body tasked with reviewing, approving, and monitoring research involving human subjects to ensure ethical standards are met.
The IRB structure is designed to prevent cases like Henrietta Lacks’ by enforcing informed consent. Researchers must provide subjects with a detailed understanding of the study’s purpose, risks, and benefits before any data or biological material is collected. Although current regulations allow for the use of de-identified clinical specimens without consent, the IRB system’s primary purpose is to safeguard the rights and welfare of research participants.
The Lacks Family’s Role in Data Oversight
The ethical dialogue surrounding HeLa cells culminated in a unique governance arrangement decades after Henrietta Lacks’ death. In 2013, the National Institutes of Health (NIH) reached an agreement with the Lacks family following concerns regarding the public release of the full HeLa cell genome sequence. This sequence contained information that could potentially reveal genetic predispositions for health conditions in Lacks’ living descendants.
To address these privacy issues, the NIH created a HeLa Genome Data Access Working Group, which includes two representatives from the Lacks family. This group reviews applications from researchers seeking access to the complete genomic data of the HeLa cell line. The arrangement ensures the family has direct participation in the decision-making process concerning the use of their matriarch’s genetic information.
Researchers granted access to the data must adhere to specific controlled-access guidelines and acknowledge the Lacks family in their publications. This unique governance model ensures family control and recognition, marking a significant step toward rectifying the historical lack of consent and respect. The agreement balances the need for scientific progress with the imperative to honor patient rights and family interests.