In 1951 Henrietta Lacks walked into the colored wing of Johns Hopkins Memorial Hospital for treatment of cervical cancer. She wasn’t cured, but this fateful visit changed  the world of science and genetics forever.

Who is Henrietta Lacks?

Henrietta Lacks was a young mother of five children living in Maryland with her husband. Before becoming pregnant with their fifth child, Henrietta noticed a “knot” on her cervix. In February 1951, a biopsy revealed that she had stage 1 cervical cancer and her doctor referred her for further treatment at Johns Hopkins Hospital, one of the only hospitals that treated Black patients at the time.

Research Culture in the 1950’s at Johns Hopkins

At the time of Henrietta’s first visit to Johns Hopkins Hospital’s colored-wing, Dr. Richard TeLinde, head of the Gynecology department, was working on research to prove his theory that carcinoma in situ (cancer cells that have not spread from their origin site) often precedes invasive cervical cancer. To do this, he involved George Gey, head of tissue culture research at Hopkins.

Dr. TeLinde began collecting tissue samples from any Black woman who walked into Hopkins with cervical cancer, without their knowledge or consent. In the 1950’s, many doctors believed that since patients were treated for free in these public wards, it was fair to use them for research without their consent as a form of payment.

Henrietta’s Diagnosis and Treatment at Johns Hopkins

During Henrietta’s biopsy, two dime-sized pieces of tissue from her cervix were taken: one from her tumor and one from healthy cervical tissue. Henrietta did not know samples were being collected, was not asked if she wanted to be a donor and was not compensated.

Tubes labeled “HeLa” containing Henrietta’s cervical tissue samples were incubated in Gey’s lab. This had been done with multiple women’s tissue samples and none of them had survived for long. However, after a couple of days, Henrietta’s cancerous cells were not only surviving but growing at a rapid pace -- they had doubled from their original quantity. Soon after, Gey was  making TV appearances, boasting about growing the first immortal human cells, and sharing sample tubes with his colleagues all over the world. Throughout this breakthrough, Henrietta Lacks was never mentioned.

Cervical cancer ultimately led to Henrietta’s death just a few months later, at the age of 31.

The Legacy of HeLa Cells

The “HeLa” cell line, derived from the biopsy of Henrietta Lacks, is the oldest and most commonly used human cell line. Within a decade of Henrietta’s death, HeLa cells were used to test the first polio vaccine which was instrumental in eradicating Polio. HeLa cells were also instrumental in developing HPV vaccines and are widely used in cancer research.

The legacy of HeLa cells extends to the field of genetics as well. In 1953, just two years after the death of Henrietta, HeLa cells were mixed with a liquid that allowed researchers to clearly see and count each human chromosome. Thus, HeLa cells helped lead to the discovery that humans have 23 pairs of chromosomes, and the birth of genetic medicine.

Although Henrietta did not knowingly change the scientific world, HeLa cells have become an integral part of scientific research. HeLa cells have impacted virology, immunology, toxicology, microbiology, oncology, genomics, genetics, and more. Many of the technologies used today in medicine can be traced to a scientific study using HeLa cells. Additionally, the creation of HeLa cells, and the impact that they had on the Lacks family, highlighted the importance of informed consent.

The Impact of HeLa Cells on the Lacks Family

Henrietta’s family was never told about the biopsy, or the advancements made using HeLa cells. Twenty-five years after Henrietta’s death, her family found out that experiments were being done with her cells. Understandably, the Lacks family was upset that their mother wasn’t being recognized by the medical community.

Most people don’t know the story behind HeLa cells, or think they came from a woman named Helen Lane, a false cover once used by Johns Hopkins. Henrietta’s story came to life in popular culture through the publishing of the 2010 book by Rebecca Skloot entitled “The Immortal Life of Henrietta Lacks”, which was then turned into a movie starring Oprah Winfrey. Viewers were shocked to learn that the Lacks children have faced medical issues for which they cannot afford care, while companies profit from selling Henrietta’s cells. Since then, some contents of the book have been disputed by one of Henrietta’s grandchildren, Ron.

Health Disparities Today & Our Job as Genetic Counselors

Henrietta Lacks’ experience was not unique. There are vast accounts of racial injustices in medicine such as the racial focus of the eugenics movement in the early 20th century, the policy failure of genetic testing for sickle cell screening in the 1970s, and the abuse of Black folks in scientific research, including the Tuskegee experiments.  There are still health disparities that exist today.

In genetics, racial disparities in predictive genetic testing (test on an asymptomatic individual to predict future risk of disease) have been well-documented. These are not only caused by an inherent mistrust within Black communities due to historical and modern wrongdoings -- which leads some of these individuals to believe that genetic tests would be used to “label minority groups as inferior”-- but also a lack of awareness and less belief of the benefits of predictive genetic testing. This then results in disparities in predictive genetic testing within these communities, which has a serious impact on diagnosis, treatment and management of genetic conditions.

Another way health disparities exist within clinical genetic services today is through Polygenic risk scores (PRS). PRS are a tool used within clinical genetics to assess a patient’s risk for developing disease in the future. However, data has found that PRS predict disease risk with lower accuracy in Black, Asian and Latin American ancestry groups compared to those with European ancestry. This disparity is due to the lack of genomic data on Black, Asian and Latin American ancestry groups, which limits the use of PRS for these groups. As such, researchers believe this could further increase health disparities between white and non-white groups.

Further, the lack of data and information on non-white genomes leads non-white patients undergoing genetic testing to have more results labelled ‘variant of unknown significance’ (VUS), compared to white patients undergoing the same test. A VUS is a genetic change of unknown meaning that does not inform treatment plans. VUS results are more common for non-white patients because the reference database for which all genetic test results are compared to is largely based on white genomes. In order for PRS and genetic testing to have higher accuracy for non-white populations, more genomic research must be done on these ancestry groups.

It is important that we, as genetic counselors, recognize that we work within an industry that has institutionalized racism and utilizes tools that limit accuracy and informative results based on race. We need to gain awareness of this so we can actively work against it to provide exemplary care to our patients of all races and backgrounds.

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