Henrietta Lacks

Ethical Challenges in Medical Research: Henrietta Lacks and the HeLa Cell Line

01/26/2024
By Erika T. Minetti

The principle of informed consent is one of the most important bioethical values at the heart of human research. The Declaration of Helsinki, which the World Medical Association set forth in 1964, outlines core ethical principles for medical researchers to follow when they work with human subjects. Its purpose is to ensure the safety of research participants, to protect their identifiable information, and to ensure their voluntary participation in research studies.

Henrietta Lacks
Henrietta Lacks https://en.wikipedia.org/wiki/Henrietta_Lacks

In 1951, scientists collected cervical cancer cells of Henrietta Lacks without her consent. Her cells were then used to establish the HeLa cell line (named with the first two letters of her first and last name) which was used in several groundbreaking medical discoveries – and is still used today.

Lack of informed consent, exposure of medical information, and the commercialization of these cells for profit are some of the profound ethical considerations that make this one of the most controversial cases in the history of medicine and medical research. While her cells were collected prior to the Declaration of Helsinki, the Lacks family is still fighting to advocate for Henrietta’s rights, 72 years after her death.

Henrietta’s Legacy

Lacks was a Black woman with a type of cervical cancer called adenocarcinoma. Doctors treated her at the Johns Hopkins Hospital, one of the few medical institutions in the country that opened its doors to African Americans, although it relegated her to a racially segregated ward. At the time of her diagnosis, she was a 30-yearold mother of five. To determine whether the tumor was benign or malignant, her medical team performed a biopsy.

A portion of the biopsy was given to Dr. George Otto Gay, who cultured the cells and established the HeLa cell line without ever informing Lacks, a fact that her family would not find out about until decades later. A cell line is a population of cells, derived from an original small number of cells that can repeatedly proliferate under laboratory conditions.

Henrietta Lacks passed away less than a year after her diagnosis. In contrast to her own short life, her long-lived cells are continuing to grow, multiply, and fuel biomedical research around the world. They have been widely used in biomedical research, for example to study diseases like cancer, genetic engineering, to test drug candidates, and in several groundbreaking medical discoveries, including the Polio vaccine, Human Papilloma Virus (HPV) vaccine, and chemotherapy. Over 100,000 publications were written based on research using HeLa cells. Astronauts have even taken HeLa cells to space to determine whether they can survive higher levels of radiation and to see how they respond to microgravity, a project that has provided space scientists with some information about biological safety and the risks for humans traveling to space.

Bioethical Controversy and Company Profits

To say that HeLa cells have been essential in groundbreaking medical research is a large understatement, and it is perhaps for this reason that the ethical implications of this controversial case are even more salient. The commercialization of HeLa cells is another focus in the pursuit of justice.

The human origin of HeLa cells makes them a strong prototype to study the biological effects of a drug, giving researchers the ability to test a cancer drug candidate in a petri dish instead of in an animal or a human, which is time- and cost-effective and can provide robust insights into whether the drug will be safe and efficacious when used to treat patients with cancer.

HeLa cells that were stained to exhibit different components of the cell.
HeLa cells that were stained to exhibit different components of the cell.
Stained HeLa cells.
Stained HeLa cells.

In addition to their scientific advantages, HeLa cells are also easy to obtain. Vials of HeLa cells are commercially available by companies such as Sigma-Aldrich and American Type Culture Collection (ATCC) and have become abundant due to their incredibly fast growth. HeLa cells taken from Henrietta’s adenocarcinoma are often described as “immortal” due to their prolific nature, almost doubling in number every 24 hours.

While biotechnology companies have profited extensively from selling HeLa cells, the Lacks family has battled poverty and struggled to pay healthcare bills. In 2023, the Lacks family reached a settlement with Thermo Fisher Scientific, the result of a lawsuit filed in 2021. Although details of the lawsuit are unavailable, the settlement is a significant milestone in sharing the profit earned from using HeLa cells and aligns with the American Medical Association Code of Medical Ethics which outlines the importance of “sharing profits from the commercial use of human biological materials with the tissue donor in accordance with lawful contractual agreements”. The Lacks family lawyer, Chris Ayers, has indicated the possibility that other, similar lawsuits are under consideration to guide the use of HeLa cells with current bioethical principles and restore justice.

The Right to Medical Privacy

A third key aspect of this case has been the importance of safeguarding health information in biomedical research. In 2013 Lars Steinmetz, a geneticist at Stanford University, and his team published a peer-reviewed paper containing the complete genetic material, or genome, of HeLa cells. Ethicists viewed this publication as severely problematic since genetic information obtained from Henrietta Lacks’ cells can reveal health information of family members who are biologically related to her. Given the value of genetic information for a cell line that has been extensively studied, the Lacks family reached an agreement in the same year with the National Institutes of Health that strikes a balance between allowing use of the genome to advance medical research while safeguarding their private health information.

Advocacy has been one of the most powerful tools used to give Henrietta a voice, to give visibility both to the medical influence and the ethical dilemma of her story. Spearheading such efforts is Rebecca Skloot, author of the book The Immortal Life of Henrietta Lacks, who outlines the story of Henrietta and her cells, as well as the impact of this case on the Lacks family. From the book, a movie directed by George C. Wolfe with the same name was also made, starring celebrities Oprah Winfrey and Rose Byrne.

From the birth of the HeLa cell line in 1951 to today, the dynamic relationship between scientific progress and ethical responsibility has been evaluated and reevaluated in search of medical breakthroughs, as well as in pursuit of justice for Henrietta Lacks and her family. Scientists must continue to reexamine how to approach using HeLa cells in order to ensure the highest and most current ethical standards, regardless of how their predecessors originally obtained these valuable cells.

Erika MinettiErika Minetti was born and raised in Milan, Italy and moved to Boston in 2015 to pursue a degree in Biochemistry and Molecular Biology at Boston University with a minor in music performance. She recently graduated from Boston University Graduate Medical Sciences with a M.S. in Medical Sciences, and is currently doing research on vascular endothelial health.

 

This article was originally published in AWIS Magazine. Join AWIS to access the full issue of AWIS Magazine and more member benefits.