Who Owes the Henrietta Lacks Family?

Imagine being in a situation where your tumor cells were used for countless scientific experiments, without your consent. Safeguards today are in place to prevent such a situation, but in 1951 a woman, Henrietta Lacks, and her family found themselves in that very situation. Rebecca Skloot unveiled Henrietta’s story in a book called The Immortal Life of Henrietta Lacks, that was then made into a movie April of 2017. Henrietta’s story raised questions about ethics, and race. The book shed light on the dark history of African Americans in the medical world, and the legality of who truly owns genetic material.

In the story, unknown to Henrietta tissue was removed from her tumour and sent to George Gey's lab at Johns Hopkins Hospital to be cultured. Gey had attempted for years to get cells to divide constantly and infinitely in the lab so that the science community could have a bottomless supply of human cells for performing experiments. Henrietta was never informed by Gey that her tumour was being used for research.

Despite aggressive treatment, Henrietta Lacks died at 31 years old, she left behind 5 children. Later in the future, her children learned accidently, that their mother’s cells, named HeLa cells, were being used in countless amounts of research. The research that used HeLa cells led to the massive for-profit industry of pharmaceuticals. While the Lacks family lived in American poverty and never received financial benefits produced from the use of their mother’s cells. Back in 2013 the NIH and the Lacks family came to a new understanding of crediting Henrietta Lacks’ involvement in genetic research, however it didn’t include any financial compensation for the family. Even though the Lacks family didn’t receive a dime of the profits that came from the research generated by HeLa cells, it was a moral and ethical victory for the family after being excluded from acknowledgment in genetic research. Since the situation Henrietta was involved in, was back in the 1950’s the process by which taking tissue from a patient without consent may not have been illegal. That would, unfortunately, mean no financial compensation would be legally due to the family until a contract is drawn up for the Lacks family to own the rights to their mother, for a lack of words.

Lacks family worked with NIH along with scientists and ethics experts from Johns Hopkins to talk about how to continue publishing documents about the genetic makeup of HeLa cells. Getting the genetic information of HeLa cells out to researchers could potentially help make more advancements to the medical field. However, the Lacks family wanted to know if their privacy would be put at risk if the genetic information was public. This was resolved, an arrangement was made with the family not to release the entire genome into papers or online to the public to help protect their privacy, the genome’s information was to be limited to researchers not the public. When the U.S. Supreme Court ruled that naturally occurring genes could not be patented, the issue of compensation became much less important.

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