Earlier this month, the 1st of August 2021, marked the 101st birthday of Henrietta Lacks. While she died in 1951 of cervical cancer, her life and her unknowing contribution to cancer research is something that should be celebrated – and remembered as a reminder as to the importance of obtaining informed consent in medical research.
Lacks was born on the 1st of August 1920, in Roanoke, Virginia. In 1951, aged 31, she visited Johns Hopkins University hospital (one of the few hospitals to treat African-Americans at the time) in Baltimore, complaining of a ‘knot’ in her womb. She was found to be pregnant, but after giving birth she hemorrhaged, and a biopsy was taken of the mass on her cervix. She was diagnosed with a malignant epidermoid carcinoma of the cervix, and during her treatment at Johns Hopkins, two samples were taken without her knowledge or consent: one of healthy tissue, and the other of cancerous tissue.
Soon after, these samples were given to a cell biologist at Johns Hopkins, George Otto Gey, who had collected cells from other patients but had little success in keeping the samples alive. This changed on the discovery of Lacks’ cells: where others died, the cells of Henrietta Lacks doubled every 20 to 24 hours. These cells, later known as HeLa (Henrietta Lacks) were shared by Gey with scientists from around the world. Since then, they have been used to study the effect of toxins, drugs, hormones, and viruses on the growth of cancer cells without the need to experiment on humans. HeLa cells have been used in space, played a role in the creation of the HPV vaccine, and more recently, COVID-19 vaccine development.
A Legacy of Exploitation
For all the beneficial developments that HeLa cells have helped create, they have been marred by the fact that they were collected unethically, without Lacks’ knowledge or consent. Additionally, Lacks’ family was unaware that the cells were in existence until 1973 when they were approached by scientists at Johns Hopkins for blood samples in order to learn more about the HeLa cells.
40 years later, in 2013, the European Molecular Biology Laboratory in Heidelberg, Germany, published the HeLa genome without the consent of the Lacks family. While the paper was later removed, the publication once again pushed the debate on genomic privacy to the fore. In response, the NIH published the ‘HeLa Genome Data Use Agreement’, restricting access to use of the genomic information, and including a clause to recognize the contribution of Lacks when reporting or presenting on scientific findings which use HeLa cells. You can read an example of this acknowledgment here.
Making amends
In recent times, the rise of civil rights movements such as Black Lives Matter have sought to shine a spotlight on the issue of racism in medicine. One focus of this has been on the payment of reparations to those impacted by medical racism. In the case of Henrietta Lacks, this has meant that several medical institutes, which have used HeLa cells in research, have donated to the Henrietta Lacks Foundation. While this may not right the wrongs of the past, the foundation supports members of the Lacks family as well as others impacted by medical racism.
The story of Henrietta Lacks has also been a major catalyst for policy change, especially in the United States around informed consent. In September 2015 the US federal government published new guidance stating that with a few exceptions, consent would be required to use all biospecimens in research, regardless of identifiability, or whether they were collected for research, clinical or other purposes.
While there is no straightforward answer to the question of how to make amends for the use of HeLa cells, one thing is certain: that the contribution of Henrietta Lacks to modern medicine, in terms of lives saved, is something which should be celebrated.
The views expressed are those of the author. Posting of the blog does not signify that the Cancer Prevention Group endorse those views or opinions.
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