The National Institutes of Health in the US has reached an agreement with the family of the late Henrietta Lacks to allow researchers access to her whole genome data of her cells, commonly known as HeLa cells.
Henrietta Lacks was an African-American woman who was 31 when she died of cervical cancer in 1951. Cells were extracted from the biopsy of her tumor sample for use in research without her knowledge or consent. But her cancer cells became the first human cells cultured continuously for use in research. They have helped to make possible some of the most important medical advances of the past 60 years, including modern vaccines, cancer treatments, and IVF techniques. They are the most widely used human cell lines in existence.
Her family only learned that their mother’s cells had been scattered around the world in 1973. Their complaints were largely ignored for many years, but in 2010 her story became the subject of intense publicity and debate with the publication of a best-seller, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot.
At the time, there were no federal regulations or restrictions on the use of patients’ cells in research.
There have been many apologies and expressions of regret from the scientific community for exploiting a poor black family, although, at the time, there were no federal regulations or restrictions on the use of patients’ cells in research.
But not everyone has grasped the importance of consent. Just a few months ago, something worse happened: German researchers published the first sequence of the full HeLa genome. This compromised not only Henrietta Lacks’s genetic privacy but also that of her descendants. After they complained the researchers removed the sequence from public view.
The NIH’s agreement with her family allows them to have a say in the use of her cells and genomic data, but no financial compensation. All researchers who use or generate full genomic data from HeLa cells must now include in their publications an acknowledgement and expression of gratitude to the Lacks family for their contributions.
But researchers recognise that there are still big problems with obtaining consent for tissue samples. “If we are going to solve cancer, it’s going to take a movement of tens of thousands, or hundreds of thousands, of patients willing to contribute information from their cancer genomes towards a common good,” Eric Lander, of the Broad Institute, told the New York Times. “We are going to need to have ways to have patients feel comfortable doing that. We can’t do it without a foundation of respect and trust.”