Rare Black History: After A Childhood Home of Rare Disease Patient Henrietta Lacks Was Demolished, Statues Were Raised

According to a story from the Baltimore Sun, a childhood home of Henrietta Lacks – a Black woman often dubbed “the mother of modern medicine” – was unknowingly demolished just a few months before the COVID-19 pandemic began. Lacks, born in Roanoke, Va., likely lived at the house for only about a year or so early in her life. The home had fallen into disrepair and was condemned by the city. Years later, in October 2023, Lacks was finally honored with statues in her hometown.

A Hidden Discovery

Former mayor of the city, Nelson Harris, learned that the house was associated with Lacks by researching old residential records from the time. However, he failed to spread the word in time. The structure was not located in a historic district and was therefore assumed, at least by law, to have little historic value. The incident has inspired a local campaign to organize a memorial for Lacks. The address for the house had been 1102 Norfolk Ave.

Lacks was 31 years old when she was being treated at Johns Hopkins University for cervical cancer, a rare disease.

The HeLa Cell Line

During Henrietta’s time at at Johns Hopkins University, the doctors extracted some of her cancer cells; she died shortly after. Without her knowledge or consent, these cells were used in research and ultimately led to the development of the HeLa cell line, named after Henrietta. These cells were the first ever immortalized human cell line. Because of their ability to replicate indefinitely in the lab setting, they have been used as an incredibly valuable tool for research. Her cells have generated billions in profit for the pharma industry and led to  medical breakthroughs, such as the polio vaccine. Johns Hopkins, which now maintains information about Lacks’ legacy, has more information about HeLa cells here.

As noted in the article from the Baltimore Sun, Lacks’ story raises ethical concerns about consent in medical research, as well as privacy. At the time, permission to use a person’s cells for research was neither legally required nor commonly sought, something that has changed today. The family only learned in 1975 that cells from Lacks were being used in a mass scale for research. In the 1980s, her family’s medical records were also published without their consent.

The Lacks estate filed lawsuits in October 2021 and again in August 2023 against pharmaceutical companies for “unjust enrichment,” claiming that the companies profited from Henrietta’s cells without consent. While the earlier lawsuit was settled, the second is still ongoing. The Food and Drug Law Institute has more information about the legalities of the Lacks case and patient consent here.

Both the City of Roanoke and Virginia Tech unveiled statues honoring Lacks in October 2023.

About Cervical Cancer

Cervical cancer affects the cervix, which is the lower part of the uterus. It often does not cause symptoms at first. In the majority of cases, infection with human papillomavirus (HPV) is the cause. Other risk factors include smoking, using oral contraceptives for a long time, and having a large number of children. The majority of cervical cancers are squamous cell carcinoma. Symptoms include vaginal bleeding, bleeding after sex, pain during sex, vaginal discharge, swollen legs, pain affecting the pelvis, legs, or back, fatigue, weight loss, and appetite loss. Treatment for cervical cancer can include hysterectomy, trachelectomy, radiation therapy, and chemotherapy, sometimes in combination. Outcomes for this cancer have improved in developed nations, mostly due to earlier detection via screening. The five year survival rate in the US is around 68 percent. To learn more about cervical cancer, click here.

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