This fascinating book has found a well-deserved place on many Best-of-2010 lists. In compelling prose, Skloot tells the story of Henrietta Lacks, a poor black woman from rural Virginia, who died of cancer in 1951 in Johns Hopkins Hospital. Cells harvested from her tumor, in accordance with the standard practice of the time, became the first cells that could be grown in a laboratory, a huge advance for medicine because they enabled researchers to run tests in laboratories instead of on live people. HeLa cells, named for Henrietta Lacks, are today used in laboratories around the world and have led to such benefits as the vaccine for polio, a better understanding of cancer, in vitro fertilization, and gene mapping. Just before her death, Henrietta was told that her cells would help save lives and she said that “‘she was glad her pain would come to some good for someone.'”
Yet Henrietta’s family knew nothing of the continued existence of her cells nor of the contributions to society they enabled. Scientists from Hopkins contacted them occasionally over the years, partly in order to see if other family members could provide cells with similar benefits, but the Lacks family could not follow the technical discussion, thinking instead that they were being tested for cancer and baffled when no one at Hopkins could give them their test results.
The medical profession and hospitals are mistrusted by much of the black community, and no wonder considering such abuses as the Tuskegee syphilis study. Yet, Hopkins was founded with the intention of providing medical care to all, regardless of ability to pay, and, indeed, Henrietta was treated for free. Hopkins has not made any money from Henrietta’s cells. Rather, they gave them to labs which have made a lot of money over the years growing and selling HeLa cells to meet the huge demand in the medical community. Meanwhile the Lacks family have lived in poverty, often without health insurance themselves, receiving neither recognition or compensation for Henrietta’s contribution.
Should they have? Skloot explores this and other complicated ethical issues in this fascinating book, while giving us the story of Henrietta’s life and the subsequent lives of her family. Skloot relates the convoluted progress of her attempts to contact the family and her eventual partnership with Henrietta’s daughter, Deborah. Together they uncovered Henrietta’s story, sharing their different pieces of that story.
Full disclosure: I heard Rebecca speak and met her briefly at one of Lee Gutkind’s Creative Nonfiction Conferences at Goucher College. I had gone looking for anything that would help me figure out how to write my memoir (which is coming out later this year from Apprentice House). I found help in abundance and also a deeper understanding of this relatively new genre of creative nonfiction, i.e., applying the techniques of fiction (e.g., narrative, description, dialogue) to nonfiction. This well-written book is an excellent example of the genre, being as exciting and as readable as any novel, while managing to inform at the same time.
I also attended the first annual Henrietta Lacks Memorial Lecture at Johns Hopkins, a gracious if belated expression of the huge debt owed to this woman. Hopkins went all out, providing a background on the science involved, a presentation on the history of HeLa cells, announcing scholarships in Henrietta’s name, and inviting her family, many of whom were present, to speak. The Hopkins representatives welcomed questions and took their hits fairly, discussing the pros and cons of the issues involved. Rebecca herself spoke and read from the book, the moving passage when Deborah first holds her mother’s cells.
My book club was lucky enough to have Henrietta’s granddaughter, Jeri, attend our meeting. She passed around articles about Henrietta and patiently answered our questions. Publicity is not always welcome, but Jeri said that the younger generation is grateful for the knowledge of their family history that has been pieced together and documented by Rebecca and others. She also noted that the book expresses Deborah's point of view, which is not necessarily shared by other members of the family. This was especially interesting to me because, in writing my memoir, I struggled a lot with the issues around telling someone else's story.
Rebecca Skloot has started a nonprofit foundation in honor of Henrietta Lacks, which “strives to provide financial assistance to needy individuals who have made important contributions to scientific research without their knowledge or consent. The Foundation gives those who have benefited from biological contributions — including scientists, universities, corporations, and the general public — a way to show their appreciation to individuals like Henrietta Lacks for their contributions to science.” Recent grants have gone toward education and health care for the Lacks family. Donations may be made at henriettalacksfoundation.org/.