HeLa Cells: Henrietta Lacks Reparations

After spending 4 weeks on page 88, I finally set a goal to finish The Immortal Life of Henrietta Lacks. I accomplished the goal in a single vacation day. This National Bestseller and winner of numerous book awards tells the story of a cancer-stricken black woman whose cells continue to regenerate and inspire present-day scientific research. According to a New York Times article, “HeLa, the first human cells to grow outside the body, have been used in more than 60,000 experiments involving leukemia, Parkinson’s disease and AIDS. They were instrumental in developing the polio vaccine, chemotherapy, cloning, gene mapping and in vitro fertilization.” Although the initial intentions of the doctor involved in taking and distributing the HeLa cells wasn’t to profit, millions worldwide have benefited from something that Lacks’ own family had no knowledge of–let alone, not enough education to even understand if someone explained it to them.

Once I reached a certain point in the book, I moved beyond the ifs, hows, or whens of whether the family might receive reparations for their mother’s “stolen” cells. There were two many questions to be answered on how something like that might be achieved. But then I started to wonder whether the success of Immortal Life might mean that one more person–excluding the family–profited in a major way. After further exposing the HeLa story, I questioned how Skloot’s gains would help this family.

In February 2011, The New York Times ran an article titled “Returning the Blessings of an Immortal Life.” The first line put my concern to rest somewhat: “If there was one thing Rebecca Skloot was certain of when writing The Immortal Life of Henrietta Lacks, it was that she did not want to profit from the Lacks family without giving something in return.”After researching so many people who had profited, Skloot was already off on a positive track. Highlights from the article continue:

Mrs. Lacks had three sons and two daughters, both of whom have died.

The foundation — which is still in the process of applying for tax-exempt status from the I.R.S.— is paying for a high-tech hearing aid for Mrs. Lacks’s youngest son, Zakariyya; truck repairs for her middle son, Sonny; new teeth for her granddaughter Kimberly; braces for her great-granddaughter Aiyana Rodgers; and, yes, tuition, books and fees for five of her grandchildren and great-grandchildren.

To aid Henrietta Lacks’s three surviving sons, Ms. Skloot said that she made sure that they were hired as consultants for the HBO film, which is being produced by Oprah Winfrey’s Harpo Films and the screenwriter Alan Ball (“American Beauty,” “True Blood”). She is also working to raise money to cover more than $125,000 in medical bills that Sonny Lacks incurred after having quadruple-bypass surgery.

Ms. Skloot contributes some of her royalties and speaking fees to the foundation, though she does not follow any particular formula. Much of the $50,000 that the foundation has received from readers has come from cancer survivors and scientists who have written to say, “I owe my career to,” or “I wrote my dissertation on,” HeLa cells, she said.

Ms. Skloot said that she expected a hefty donation from Harpo Films, but that none of the large biotech companies that continue to profit from HeLa have yet to contribute.

Johns Hopkins, where Mrs. Lacks was given state-of-the-art care in its colored ward as her cells were being harvested, has not donated to the foundation, but it has established a lecture series in her name; a $10,000-a-year scholarship for students from an East Baltimore high school; and a $15,000 annual award for community health groups. As Ms. Skloot makes clear in her book, both the law and the ethics regarding medical research were different back then, and Hopkins did nothing illegal by taking a cell sample from Mrs. Lacks.

“I don’t want to be an activist and I’m not a philanthropist,” said Ms. Skloot, who has been consumed by the details of setting up the foundation over the last year. She is one of three board members; her aim is to enlarge the board and reduce her own involvement so that she can get back to what she really wants to do: write. (Read complete NY Times article . . .)

By the book’s end, this reader felt like the family had gotten over getting what was owed to them for their mother’s cells. I wasn’t over it though. Instead, they family settled on the fact that their mother’s contribution to science had helped millions of people. If you feel like they deserve more financially, then maybe you should consider donating to The Henrietta Lacks Foundation.

On to search for my next book! Happy reading, y’all.

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One thought on “HeLa Cells: Henrietta Lacks Reparations

  1. I thoroughly enjoyed this book as well. One of the most interesting medical thiller books I’ve ever read. this combination of medecin, mystery, and biography was a real winner. Skloot did a fantastic job of explaining the scientific areas in perfect laymens terms. I think this was key to its success. Not to mention the tact she used to recount the family history of Henrietta Lacks. This is a book everyone should read because it poses th question about the ethics of where do medical samples go when taken and how much we should know about what happens to those samples that are taken from us.

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