The Immortal Cells of Henrietta Lacks: A History of Ethical Controversy
In 1951, Henrietta Lacks, a Black woman being treated for cervical cancer at Johns Hopkins Hospital, had tissue samples taken from her without her knowledge or consent. These cells, designated as HeLa cells, possessed a unique ability to survive and reproduce indefinitely in a laboratory setting, a trait that proved invaluable to medical science. While other human cells would die after a few divisions, HeLa cells became the first immortal human cell line.
This breakthrough allowed for countless scientific advancements, including the development of the polio vaccine, research into cancer and viruses, gene mapping, and in vitro fertilization. For more than 70 years, HeLa cells were commercialized and sold by companies, generating immense profits for the biotechnology industry. However, for decades, Henrietta Lacks’ family remained completely unaware that her cells were being used, and they never received a penny of the profits generated.
The Lacks Family's Long Road to Justice
For many years, Henrietta Lacks' family struggled financially and with healthcare costs, while biotech companies profited significantly from her cells. It was not until the mid-1970s that the family discovered the truth, an event that, along with Rebecca Skloot's book The Immortal Life of Henrietta Lacks, brought the story to global attention. The family's fight for recognition and compensation began in earnest, highlighting issues of medical exploitation and racial injustice.
The struggle led to multiple actions and agreements over the years:
- 2013 NIH Agreement: After the HeLa genome was sequenced and published without the family's permission, the National Institutes of Health (NIH) reached an agreement with the Lacks family. This historic agreement gave the family some control over how the genetic data from the HeLa cells is used in NIH-funded research, with two family members serving on the committee that reviews access requests.
- 2021 Lawsuit: In October 2021, the Lacks family filed a lawsuit against Thermo Fisher Scientific, a major biotechnology company. Represented by civil rights attorney Ben Crump, the family accused the company of unjustly enriching itself by profiting from HeLa cells. The suit argued that Thermo Fisher's continued sale of HeLa cells long after their origin was widely known amounted to unjust enrichment and a perpetuation of racial injustice within the medical system.
- 2023 Settlement: In August 2023, the Lacks family and Thermo Fisher Scientific reached a confidential settlement in the lawsuit. The settlement, announced on what would have been Henrietta Lacks' 103rd birthday, marked a major victory in the family's decades-long fight. While the terms were not disclosed, it represents the first time the family has received significant financial compensation from a company that profited from her cells.
The Impact on Bioethics and Informed Consent
Henrietta Lacks' story is a cornerstone of modern bioethics education. The injustice faced by her and her family highlighted the need for strict informed consent procedures in medical research. The lack of consent given in 1951, while not illegal at the time, is now universally considered unethical and would not be permitted under current regulations. The case serves as a powerful reminder of past injustices, particularly those involving marginalized communities, and has spurred major reforms in research practices.
Today, research using human tissue is subject to federal regulations, such as the "Common Rule," which governs informed consent. The regulations mandate that participants be fully informed about the nature, purpose, and potential risks of research before they agree to participate. While there are some exceptions for de-identified samples, the Lacks case demonstrated the critical importance of transparency and respect for the donor and their family, even with long-existing samples.
Ethical and Financial Considerations in the Henrietta Lacks Case
| Aspect | Before the 2023 Settlement | After the 2023 Settlement |
|---|---|---|
| Family Compensation | No financial compensation from biotech companies for the commercialization of HeLa cells. | A confidential financial settlement was reached with Thermo Fisher Scientific, marking the first known payment to the family from a profiting company. |
| Ethical Recognition | The Lacks family was not informed about the use or commercialization of Henrietta's cells for over 25 years. | The settlement served as a major step toward acknowledging the deep ethical wrongs and injustices of the past. |
| Control over Genetic Data | The HeLa genome sequence was published without the family's consent, violating their privacy. | The family secured an agreement with the NIH in 2013, giving them a role in regulating access to the HeLa genome data. |
| Accountability | Decades of protest and advocacy without legal or financial recourse from profiting companies. | The lawsuit and settlement successfully held a major biotech company accountable for profiting from her cells. |
| Ongoing Legacy | Story highlights historical racism and exploitation in medicine, influencing bioethics. | The settlement builds on the legacy by asserting patient rights and showing that legal action can yield tangible results for past injustices. |
Conclusion: A Turning Point in Medical History
The confidential settlement reached between the Lacks family and Thermo Fisher Scientific in August 2023 was a moment of profound significance, closing a painful chapter for the family. The answer to the question did Henrietta Lacks' family get paid? is now yes, in part, although it came over 70 years after the unjust taking of her cells. This landmark event represents more than just a financial transaction; it is a powerful symbol of accountability for past medical injustices and a testament to the family's perseverance. The Lacks family’s fight has fundamentally reshaped medical research ethics, ensuring that future patients have rights and agency over their own biological materials.
For more detailed information on the ethical context surrounding this case, visit the AWIS resource on the ethical challenges of the HeLa cell line.
The Commercialization of HeLa Cells
Over the decades, HeLa cells have been a massive source of commercial profit for the biotech industry. The reasons for their commercial success include:
- Versatility: Their ability to survive and reproduce indefinitely in a lab has made them an ideal tool for countless experiments.
- Accessibility: HeLa cells were widely distributed to researchers and later sold by various companies, making them readily available.
- Technological Applications: As the foundation for numerous scientific innovations, from vaccine development to genetic mapping, the commercial applications of HeLa cells expanded exponentially over time.
- Profitability: Companies like Thermo Fisher Scientific have earned billions in revenue by selling products containing or derived from HeLa cells.
This widespread commercialization without consent or compensation was a central issue in the family's lawsuit.
