A Bizarre Instance Surrounding Genetics is the Story of Henrietta Lacks
This 1940s photo made available by the family shows Henrietta Lacks. In 1951, a doctor in Baltimore removed cancerous cells from Lacks without her knowledge or consent. Those cells eventually helped lead to a multitude of medical treatments and formed the groundwork for the multibillion-dollar biotech industry. On Wednesday, Aug. 7, 2013, under an agreement announced by the federal government, Lacks family members will have a say in how such research proceeds. (AP Photo/Lacks Family via The Henrietta Lacks Foundation)
One of the most bizarre instances surrounding the study of genetics and genomics is the story of Henrietta Lacks.
In 1951, Lacks, a 31-year-old African American woman, was diagnosed with cervical cancer. Without her knowledge or consent, doctors at Johns Hopkins Hospital took a biopsy of her cancerous cells.
These cells, which were later named HeLa cells after Lacks, turned out to be the first immortal human cell line that could grow indefinitely in a laboratory.
In the course of medical procedures like surgery or mole removal, you may not realize that any leftover tissue or blood may not be disposed of, but rather kept in a lab for research purposes. Even if you were not asked to donate your cells, doctors can use your specimens as long as they are “de-identified,” with personal information removed.
This practice of using human tissue for research was once a common but largely unknown phenomenon, until the release of Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, in 2010. The book brought attention to the debate among researchers, bioethicists, and the public regarding the ethicality of the practice and whether the benefits of science truly outweigh the potential harm to individuals whose donated cells may be used without their knowledge or consent.
The discovery of HeLa cells was a major breakthrough in biomedical research, as they were used to develop vaccines, study disease, and test drugs. However, the story behind the cells was not widely known until the 1970s, when scientists began to investigate the origin of the cells.
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The Lacks family was shocked and outraged to learn that their mother’s cells were being used in research without their knowledge or consent. They also did not receive any financial compensation for the widespread use of the cells, which have been estimated to be worth billions of dollars.
The case of Henrietta Lacks raises important ethical questions about the use of human tissue in research, informed consent, and ownership of genetic material. It has spurred discussions and debates in the scientific community about the need for transparency and guidelines when it comes to the use of human biological material.
Though Lacks died in 1951, HeLa cells were and still are used in labs around the world. They were used for the discovery of the polio vaccine, chemotherapy, gene mapping, and in vitro fertilization, among other medical breakthroughs. (Researchers still haven’t figured out why they’re “immortal,” but they’ve since discovered other similarly inextinguishable cell lines.)