Examining consent and racial inequities.
Henrietta Lacks, a Black woman who passed away in 1951 from cervical cancer, unknowingly made an enduring impact on science. Without her knowledge or consent, doctors at Johns Hopkins Hospital took samples of her cancer cells, which possessed exceptional properties in the laboratory. These cells, known as HeLa cells, became vital for biomedical research, contributing to breakthroughs in cancer, immunology, and infectious diseases. They have even played a role in COVID-19 vaccine development.
However, Lacks's story also reveals the deep-rooted racial injustices within the US research and healthcare systems. She was a Black patient in a hospital that predominantly served Black individuals. Her cells were shared without her family's consent, her identity was publicly disclosed, and her medical records were exposed for many years without permission. Throughout this period, her family received no financial compensation for using her cells.
In response to the #BlackLivesMatter movement and the disproportionate impact of COVID-19 on communities of color, scientists are now confronting these past injustices. Some argue for reducing or eliminating the use of HeLa cells, believing that their initial acquisition without consent perpetuates ongoing harm. However, many of Lacks's descendants, leading the #HELA100 campaign, prefer to celebrate her life and legacy. They seek acknowledgment that HeLa cells originated from an African American woman with a personal story.
Efforts have been made to establish more robust rules for the use of the Common Rule, which protects participants in federally funded research, is being considered. It requires obtaining consent from individuals whose biological samples are used, even if the samples are anonymized. This proposal, previously unsuccessful in 2017, necessitates renewed discussion.
Addressing racial disparities in basic research is another crucial step. For example, some researchers using HeLa cells have voluntarily offered financial compensation to the Henrietta Lacks Foundation, supporting Lacks's descendants and other families whose bodies were used without consent for research. Institutions and researchers must reflect on their work and determine how best to rectify past injustices. They should also focus on studying and addressing the disproportionate impact of diseases like COVID-19 on marginalized communities.
Acknowledging and rectifying the wrongs of the past and present is essential, even though they cannot be undone. Achieving justice and promoting equitable practices in scientific research requires a collective commitment to addressing consent issues, racial disparities, and the specific needs of marginalized communities.
Source:
(2020). Henrietta Lacks: Science must right a historical wrong. https://doi.org/10.1038/d41586-020-02494-z