HeLa: A lesson in scientific outreach

The story of Henrietta Lacks and the need for close collaborations between scientists and participants of research and their families

WrittenBy:Science Desk
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By Sahana Shankar 

When I told my comicbook geek husband that I would spend the weekend reading about HeLa, he was flabbergasted that I would read a comic about the Marvel supervillain Hela, played by Cate Blanchett in the new Thor movie! Imagine his displeasure when the book turned out to be the 2010 New York Times bestseller, The Immortal Life of Henrietta Lacks by Rebecca Skloot, an account of how the eponymous cell line came into existence and its ramifications. The title may seem familiar, since it was recently made into a motion picture starring Oprah Winfrey, Rose Byrne and Renée Elise Goldsberry.

For the uninitiated, Henrietta Lacks was a tobacco farmer from Virginia who died of cervical cancer at age 31. During her chemotherapy, biopsy tissues were taken from her to study the nature of the tumour. Dr Gey, a physician and cancer researcher from Johns Hopkins Medical School, discovered that the cells from her tumour were unique in that they were able to grow outside of the human body and could be cultured forever. It was a major scientific breakthrough in 1951 at a time when human cells were unavailable for research. Understandably, HeLa cell lines were instrumental in understanding cancer, AIDS, viral and bacterial infections, development of vaccines and current advancement of the IVF technology.

The Immortal Life of Henrietta Lacks comes after a decade of rigorous research by Skloot. No doubt, this creative non-fiction book is an exemplary piece of science writing. Her passion to seek Lacks’ story out from her hometown, the segregated ward at Johns Hopkins Hospital to recent scientific research labs is evident from the appropriate context that she provides with years of research, interactions with Lacks’ family, especially her daughter Deborah and scientific experts. She deftly brings out the scientific, social, racial, economic and personal nuances at the heart of the controversy of the HeLa cell line.

When I picked up the book, I told myself that it counts as scientific literature search. After all, scientists use HeLa cells in a multitude of ways. Almost every other biomedical article published uses HeLa cells in some sort of experimental procedure. After a few pages and multiple searches on the internet, the book opened up a plethora of questions on privacy, consent, ethics and handling of patient samples. While this is a myriad of complex problems, the one that stayed with me was the lack of outreach. Had an attempt been made at any point, to explain to members of the Lacks family about how Lacks’ cells had serendipitously ushered in a new era of research, they would be less suspecting of being taken advantage by scientists.

In 1951, patient consent was not a requirement to use discarded tissue for scientific research. When Gey received Lacks’ biopsy tissues, he could grow the cells on a petri dish and established a model system to understand disease and therapy. However, her family never heard of these developments until much later, when HeLa cell line had become the mainstay of biomedical research. They were introduced to it in the context that cells from Lacks were enabling certain people to make millions of dollars, while her family lived in abject poverty, not able to afford health insurance. Their reticence comes from the fact that researchers obtained and worked on Lacks’ cells without her consent and profited from it.

While the law (Moore vs The Regents of California) is quite clear that the family is not entitled to any compensation for the use of Lacks’ cells, their mistrust in the scientific community is not entirely misguided. In 2013, the genome sequence of the HeLa cell was published. After the family raised concerns about sensitive information being made public, the data was removed from public access.

Once an attempt was made to involve the Lacks in the research, they were far more accepting and receptive of the magnitude of HeLa’s utility. Between March and August, 2013, a team of scientists from NIH met the Lacks family regularly to address their privacy issues. They were put in touch with clinical geneticists who gave them a sense of how far the HeLa cells have journeyed and what they have contributed to our understanding of the human body. They decided that they wanted to share the genome information on a restricted-access mode, strictly for biomedical research.

The HeLa cell line is unique in its extent of availability, versatility as a cell line, controversy and acclaim. Each of the cells embody Lacks’ resilient spirit and ‘never-say-die’ attitude. It teaches us that science benefits from close collaborations not only between scientists but also involving participants of research and their families.


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