The Story of Henrietta Lacks and the Hela Cells

In 1951, Henrietta Lacks, a 31-year-old African American woman, visited Johns Hopkins Hospital, one of the few hospitals that treated Black patients during the segregated era. She was diagnosed with an aggressive form of cervical cancer. During her treatment, without her knowledge or consent, doctors took a sample of her cancerous tissue.

The Medical Breakthrough

The cells taken from Henrietta Lacks were unusual. Unlike most human cells, which die after a few divisions, her cells were “immortal.” They could grow and replicate indefinitely under laboratory conditions. These cells, named HeLa cells, became one of the most important tools in medical research.

Key Contributions:

• Development of the polio vaccine
• Advances in cancer research
• Studies on virology, including HIV/AIDS
• Contributions to gene mapping and in vitro fertilization (IVF)

The Ethical Dilemma

For decades, Henrietta’s family had no idea that her cells were being used in research or that they had revolutionized medicine. Her cells were commercialized, sold, and distributed worldwide, generating billions of dollars in profits for pharmaceutical companies and researchers. Meanwhile, her family, many of whom struggled with poverty and health issues, did not receive any financial compensation or recognition. The Legal Battle

Henrietta Lacks’ story became widely known in 2010, after the publication of The Immortal Life of Henrietta Lacks by Rebecca Skloot. The book shed light on the exploitation and ethical violations surrounding her case.

Legal Challenges:

In the years following the book’s publication, the Lacks family sought justice. In 2021, they filed a lawsuit against Thermo Fisher Scientific, a biotechnology company that continued to use and profit from HeLa cells. The family accused the company of unjust enrichment and exploitation of Henrietta’s legacy.

Outcome: In 2023, Thermo Fisher Scientific settled with the Lacks family for an undisclosed amount. The case was hailed as a victory for the family and a step forward in addressing historical wrongs in medical research.

Key Issues and Questions Raised

Informed Consent

Henrietta Lacks was never asked for her permission to use her cells. This case highlighted the importance of obtaining informed consent from patients before using their biological materials in research.

Medical Exploitation

The case underscored the exploitation of marginalized groups in medical research, particularly during an era of systemic racism.

Ownership of Genetic Material

Who owns biological materials once they’re removed from a patient’s body? This question remains unresolved in many legal systems.

Compensation for Patients

Should patients (or their families) receive financial benefits when their biological materials lead to profitable medical advancements?

Legacy of Henrietta Lacks

Henrietta Lacks’ story continues to influence medical, legal, and ethical landscapes. Her cells, while immortal, are now accompanied by a growing recognition of the need to balance scientific progress with justice and respect for individuals.

In 2021, the World Health Organization (WHO) honored Henrietta Lacks posthumously, recognizing her “immortal” contribution to science and humanity.

Diving Deeper into the Legal Implications of the Henrietta Lacks Case

Henrietta Lacks’ story is not just a tale of groundbreaking scientific discovery but also a stark illustration of the legal and ethical dilemmas surrounding medical research. Below, we explore the deeper legal implications and how this case has influenced the broader field of bioethics and law.

1. The Concept of Informed Consent

Definition

Informed consent is the process by which a patient voluntarily agrees to a medical procedure or the use of their biological materials for research, with full knowledge of the potential risks, benefits, and alternatives.

What Happened in Henrietta’s Case?

• In 1951, there were no clear laws or ethical guidelines requiring doctors to obtain consent to use a patient’s biological materials for research.
• Henrietta’s cells were taken without her knowledge during a biopsy for her cervical cancer treatment. At the time, this was considered standard practice.

Legal Evolution Post-Henrietta

The case of Henrietta Lacks, along with other instances of medical exploitation, led to significant changes in research ethics:

• 1964 Declaration of Helsinki: Established guidelines for ethical medical research, including informed consent.
• 1979 Belmont Report: This U.S. document emphasized the principles of respect for persons, beneficence, and justice, requiring informed consent in human research.
• Modern Laws: Today, the U.S. requires explicit informed consent for most research involving human subjects under the Common Rule (45 CFR 46).

However, gaps remain in laws governing the use of “discarded” biological materials, which is central to the Lacks case.

2. The Question of Ownership of Genetic Material

One of the most significant legal debates sparked by the Henrietta Lacks case is who owns biological materials once they are removed from the body.

Legal Precedent

Moore v. Regents of the University of California (1990):

• John Moore’s spleen cells were used without his consent to develop a patented cell line worth billions.
• The California Supreme Court ruled that Moore did not have ownership of his cells once they were removed, but he could sue for lack of informed consent.
• This case established that patients do not retain property rights over their excised tissues.

Implications for Henrietta’s Case:

Like Moore, Henrietta’s family had no legal claim to the HeLa cells under property law. The Lacks lawsuit focused instead on unjust enrichment and the historical exploitation of Henrietta’s cells, sidestepping the ownership issue.

Current Legal Uncertainty:

Laws governing the ownership of genetic material remain ambiguous. For instance, genetic information is increasingly valuable for personalized medicine and data-driven research, raising questions about privacy and compensation.

3. Unjust Enrichment and Restitution

The Lacks family’s legal case against Thermo Fisher Scientific in 2021 hinged on the doctrine of unjust enrichment.

Definition: Unjust enrichment occurs when one party unfairly benefits at another’s expense, and equity demands restitution.

Arguments in the Lacks Case:

• The Lacks family argued that companies like Thermo Fisher Scientific continued to profit from Henrietta’s cells without compensating her family.
• They claimed that the commercial exploitation of HeLa cells constituted an ethical and moral violation, even if it was legally permissible when the cells were originally taken.

Outcome:

The case was settled in 2023, with Thermo Fisher agreeing to compensate the Lacks family. While the settlement details remain confidential, this resolution was seen as a step toward addressing historical injustices.

4. Impact on Modern Medical Research and Law

Henrietta’s story has spurred reforms and debates in several areas:

Research Ethics:

• Transparency: Many institutions now implement stricter guidelines for obtaining consent, even for “anonymized” or “discarded” materials.
• Community Engagement: In cases involving marginalized communities, researchers increasingly seek to build trust and involve community representatives in decision-making.

Genetic Privacy:

• Advances in genomics have made genetic privacy a significant concern. DNA from biological materials can reveal sensitive information about individuals and their families.
• Laws like the Genetic Information Nondiscrimination Act (GINA) in the U.S. address some privacy concerns, but comprehensive global regulations are lacking.

Commercial Exploitation:

• The Lacks case underscores the tension between public benefit and private profit in medical research. While HeLa cells contributed to lifesaving discoveries, the lack of compensation or acknowledgment for Henrietta’s family raises ethical questions about the fairness of such arrangements.

5. Calls for New Legislation

In the wake of the Lacks case, many advocates are pushing for reforms:

Right to Genetic Material:

Advocates argue for laws that grant individuals or their families partial ownership or a share of profits from the use of their biological materials.

Universal Consent Standards:

Calls for international treaties or agreements to establish uniform standards for informed consent in medical research.

Ethical Oversight:

Expanded roles for institutional review boards (IRBs) and bioethics committees to ensure that research involving human materials respects ethical principles.

This case serves as a reminder that laws must evolve alongside science to address emerging ethical dilemmas, ensuring that no one else’s contribution to humanity is overlooked or exploited.