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'The Immortal Life of Henrietta Lacks' Looks at a Dark Legacy of Deceit, Ignorance, and Grief

By Genevieve Burgess | Think Pieces | May 1, 2017 |

By Genevieve Burgess | Think Pieces | May 1, 2017 |

Almost exactly seven years ago, I posted a review of the book The Immortal Life of Henrietta Lacks on my now abandoned blog as part of the Cannonball Read. It was a review that Pajiba would pick up, and was part of my very early days of writing for the site. Rebecca Skloot’s book walked the line between telling the story of all the amazing things that have been accomplished with the HeLa cell line, and telling the story of Henrietta’s family, who were kept in the dark about her contribution, lied to when Hopkins came to take their blood to isolate HeLa genetic markers, and pushed aside when they tried to learn about her legacy.

The HBO film starring Oprah Winfrey and Rose Byrne focuses almost entirely on Henrietta’s family and Skloot’s work with them to investigate Henrietta’s life. The scientific advancements made possible by the cells are mentioned sometimes, but this is a movie about a woman who wants to write a scientific history, and a grieving, distrustful family who wants to learn more about the woman they lost and how those two goals collided. The edges of the Lacks family are left intact, with Oprah playing both Deborah Lacks’s deep desire to know and understand what happened to her mother alongside her scientific ignorance and tendency towards paranoid accusations of Skloot. Reg E. Cathay brings menace to the ex-felon Zakariyya even as he’s meeting a researcher at Hopkins eager to show the Lacks children their mother’s cells and what they’ve done. The story of Elsie Lacks, another sister who died in the Crownsville insane asylum in the 1950s, is also included.

It’s hard to watch, at times. This is a family that has been deeply hurt not just by the loss of their mother at a young age, but by the ongoing refusal of the scientific community to engage with them about her contributions. Deborah has been piecing together anything she can find about genetic research, resulting in a mountain of material that includes the novel Jurassic Park as well as a tabloid cover story about an “immortal woman.” Deborah and her siblings had blood taken from them by researchers from Johns Hopkins and were told they were being tested for the kind of cancer that killed their mother. They were not, the researchers were merely looking for genetic information so they could better identify HeLa cells that had contaminated other experiments. Almost all the Lacks children have various health problems that involve expensive treatment and medication, but none of them have seen a dime from the sale of their mother’s cells, or any kind of medical assistance from Hopkins in honor of her contribution. A contribution that Henrietta never consented to, or knew that she was making. Before Skloot came along to write her book, they were conned by a man who said he could get them millions from Hopkins, who later ended up suing all the Lacks children. The fact that Skloot has an easier time getting meetings with the doctors who were involved in Henrietta’s treatment than Henrietta’s family is commented upon several times. It is clear that Deborah Lacks is comfortable using Rebecca to get information that would not be given to her otherwise, while Rebecca is using Deborah to fill in the family history for her book. Their relationship is mostly friendly, but does become strained by the fact that their goals are occasionally at odds with each other.

I’ve seen some complaints that the film didn’t focus on the good work that the HeLa cells have contributed to, but there’s a reason for that; we know all about the scientific advancements, and Skloot rattles off more than a few of them through the movie. It’s mentioned. But that advancement came at a cost and it’s important to look at that too. Especially now, with companies offering to test your DNA to find out your ancestry, or your genetic predisposition to disease, for a fee. What parts of yourself do you own? What are you giving away by sending in cheek swabs, or even donating blood? Should the provider of genetic material or their families share in the profits made when that material is used in developing drugs or treatments? How do you balance the good done worldwide by the polio vaccine, the AIDS cocktail, or all the other advancements brought by the HeLa cells against one family’s pain? I don’t know enough to answer those questions, and the movie doesn’t provide hard answers either. But it makes you look at it, and it makes you think about it, and if we can get the conversation started then maybe we can find the answers along the way.

With the publication of the book, Rebecca Skloot established the Henrietta Lacks Foundation, which provides grants for “individuals who have made important contributions to scientific research without personally benefitting from those contributions, particularly those used in research without their knowledge or consent.” That is extended to their families. The foundation has given grants to members of the Lacks family, from money to go to nursing school to funds for cataract surgery. They welcome donations to support their mission.

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Genevieve Burgess is a Features Contributor for Pajiba. You can follow Genevieve Burgess on Twitter.