New York Times
By PATRICIA COHEN
Published: February 4, 2011
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.
For half a century, biotechnology companies and scientists have used the astonishingly hardy cancer cells that killed Henrietta Lacks to develop countless medical breakthroughs and establish a multimillion-dollar industry selling her cell line, known as HeLa. Poor, uneducated and black, Mrs. Lacks was not asked about allowing her tissue to be used for research before she died in 1951, at just 31, and no one bothered to explain the medical revolution that her cells produced to the family she left behind.
Since the book’s debut a year ago, it has earned rave reviews, prizes, a movie deal with HBO and a steady spot on best-seller lists. And Ms. Skloot is making good on her pledge to share the financial windfall with the Lackses.
Soon after the book came out, she created the Henrietta Lacks Foundation to help Mrs. Lacks’s descendants, some of whom suffered from the whirlwind of publicity, misinformation and scam artists surrounding HeLa cells, not to mention a lack of insurance to pay for any of the medical advances Mrs. Lacks’s cells made possible.
“I first envisioned it as a foundation for education, but I realized that the people who were affected the most were her kids, and they needed some medical care and dental care,” Ms. Skloot said from her home in Chicago.
Mrs. Lacks had three sons and two daughters, both of whom have died.
The foundation — which is still in the process of applying for nonprofit status — 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.
Sonny Lacks’s daughter Kimberly was the first to notice the phrase “other needs” in the grant guidelines. She applied for money to replace cracked and missing teeth and to care for a painful, untreated root canal.
“Now I can smile and I can eat,” said Kimberly Lacks, who received $3,000 for the dental work after she lost her job.
Her sister Jeri then applied for a grant to cover the cost of her 12-year-old daughter’s orthodontic work.
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, however, has stayed focused on education — precisely the advantage that Henrietta Lacks never had.
Although Mrs. Lacks never made it past the sixth grade, her great-granddaughter Victoria Baptiste is studying nursing at Baltimore City Community College at night, thanks to a $2,400 grant from the foundation. “Last semester I made straight A’s,” Ms. Baptiste, 29, proudly said in a telephone interview.
Between working full time, shuttling her children to scout meetings and repaying a hefty $18,000 loan from a previous educational stint, Ms. Baptiste said she couldn’t afford tuition without help. “I know my great-grandmother would want all her children to be educated, since she didn’t have that herself,” she said.
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.
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.
If the institution has not come forward, many individuals connected to it have privately supported efforts to obtain health insurance for the Lackses and to eliminate Sonny Lacks’s debt, Ms. Skloot said. Others there share Ms. Skloot’s interest in education, holding events like Microscope Day every month, when younger members of the sprawling Lacks clan and their friends can come in to look at the cells and talk about science.
Ms. Skloot’s hope is that the foundation will soon enlarge its mission to help other needy families in similar situations, particularly those used in research without their consent.
“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.
As a New York Times editor, Patricia Cohen edited an article by Rebecca Skloot on Henrietta Lacks in 2001 and is acknowledged in the book.