If doctors took a tissue sample from your mother and the products of that tissue sample were now selling for more than a $100 a vial, would you seek payment? This is one of many questions arising from this biography of Henrietta Lacks, the unwitting donor of the most prolific lab-grown human cell line in science. National Book Critics Circle insider Rebecca Skloot thoughtfully blends memoir, biography, adventure and science to provoke consideration of research ethics, family ties, and issues of race and class in America.
Skloot, the former vice president of the National Book Critics Circle,has written for The New York Times Magazine, Discover, Glamour and The Best Creative Nonfiction. She taught at the University of Memphis, the University of Pittsburgh and New York University, and contributed to NPR’s RadioLab and PBS’s NOVA scienceNOW. Her experience as a journalist and an educator shine through in her presentation of this incredible tale.
In relating the saga of Henrietta Lacks’ enduring cells, Skloot has found a powerful metaphor for enduring racist structures and racist behavior in America. By detailing how science exploited Lacks’ body without permission or remuneration – and by presenting horrible parallel affronts by the medical establishment against other African American bodies, Skloot makes it clear how exploitation endures, no matter what its name.
Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment.Rebecca Skloot
In January 1951, Skloot reports, Henrietta Lacks, 30, went to Johns Hopkins Hospital, where Dr. Howard Jones discovered a mass on her cervix. A biopsy suggested Lacks had “Epidermoid carcinoma of the cervix, Stage I.” Lacks took radium treatments, and her health faded. The mother of five, she was heartbroken to learn she wouldn’t be able to have more children. Skloot states plainly that doctors never told Lacks that the treatments would end her fertility.
Dr. Lawrence Wharton Jr. cut tissue from Lacks’ cervix for research – as per the 1950’s norm –without Lacks’s knowledge or permission. The hospital sent her tissue to George Gey, whom Skloot presents as a researcher seeking cells from any source he could find, hoping to discover a strain that would grow outside the body in perpetuity, continually dividing and restocking. Lab assistant Mary Kubicek prepared Lacks’s cells for culture and wrote “HeLa” on the test tubes.
An X-ray revealed an inoperable tumor on Lacks’s pelvic wall. In a further portrait of physicians who dehumanized their patient, Skloot reports that Lacks’s doctors never told her or her family about their diagnosis. She died on October 4, 1951.
But, Skloot explains, the cells from Lacks’ cervix thrived, doubling daily. Gey sent HeLa cells to researchers worldwide. These cells multiply reliably, whether in an airplane’s cargo hold, the pocket of a pilot’s shirt or a virologist’s handbag. At first, Skloot discovered, Gey gave HeLa cells away. The Tuskegee Center provided HeLa cells to researchers for a $10 shipping fee. Researchers later sold them for between $25 and $167 per vial. Neither Henrietta Lacks nor her family consented to the research use of her tissue, and the family received none of the money it earned.
Skloot presents the fundamental, tragic contradiction at the heart of Lacks’s story. Though the cells were stolen from her body, they are responsible for many positive outcomes. Researchers used the HeLa line to test drugs, vitamins and hormones. They infected the cells with salmonella, tuberculosis and bacteria.
The HeLa cell line played a role in Dr. Jonas Salk’s polio vaccine. Depicting the moral uncertainty surrounding these cells, Skloot relates how black scientists at Tuskegee University evaluated the vaccine before distribution and made crucial but uncredited contributions.
HeLa cells grew much faster than normal cells, and therefore produced results faster. HeLa was a workhorse: It was hardy, it was inexpensive and it was everywhere.Rebecca Skloot
Skloot emphasizes that HeLa cells helped advance cell-culturing methods that led to progress in genetics, stem cell research, cloning and in vitro fertilization. The author poses uncomfortable questions about how science and medicine progressed in the hands of researchers who disregarded the rights of research subjects. Skloot’s account of the exploitation of Henrietta Lacks – published in 2010 – remained on The New York Times bestseller list for six years; the tale and her telling of it resonate with white and black Americans.
For decades, Skloot details with compassion, Lacks’s children had no idea about the crucial role their mother’s cells played in science. When Henrietta Lacks’s name and legacy became public knowledge, reporters, opportunists and researchers harassed the family.
If our mother is so important to science, why can’t we get health insurance?Lawrence Lacks, Henrietta Lacks’s oldest son
Many people – and Skloot tells the world who – profited from Lacks’ cell line monetarily or through career advancement while her family remained in poverty.
Exploited African Americans
Skloot’s findings become even more uncomfortable when she addresses how researchers willfully sabotaged the health of black victims. She investigates one of the most heinous medical scandals of the 20th Century. The Tuskegee syphilis studies began in the 1930s, when syphilitic patients submitted to medical exams and experimental treatment in exchange for hot meals and burial stipends. Except, they would have lived, Skloot clarifies, if researchers had provided antibiotics instead watching their patients “die slow, painful and preventable deaths.” The study lasted 40 years and came to light in the 1970s.
The deception was for his benefit – he was withholding information because patients might have refused to participate in his study if they’d known what he was injecting.Rebecca Skloot
Skloot also cites “Mississippi appendectomies” – doctors performing hysterectomies on black women without telling them. During lead poisoning studies in the 1990’s, Skloot discloses, some doctors never told black families when blood tests showed that their children had elevated levels of lead.
The Nuremberg Trials
To establish the historical precedent that led to the creation of ethics codes for researchers, Skloot reminds readers of the brutal experiments Nazi doctors conducted on Jewish prisoners. The trial of Nazi war criminals in Nuremberg, Germany in 1945 resulted in the Nuremberg Code, which rules that doctors must gain consent from human subjects. Many people, Skloot laments, didn’t regard the Code as relevant to modern researchers. They insisted it impeded science. It was 1974 before the United States required federally funded researchers to gain institutional review board (IRB) approval for using human subjects.
The skeptical Lacks’ family, Skloot details heartbreakingly, attributed her interest in Henrietta Lacks’s saga to intervention from their mother in heaven. They told Skloot, “She was trying to get your attention.” And Lacks certainly got that.
This thinking would apply to everything in my life: When I married while writing this book, it was because Henrietta wanted someone to take care of me while I worked. When I divorced, it was because she’d decided he was getting in the way of the book.Rebecca Skloot
Skloot’s passion for this story, her outrage at Lacks’ – and others’ – treatment at the hands of the medical establishment resounds with extraordinary power. Skloot digs deeply into the convoluted history and implications of Lacks’ cells. Her heartfelt commitment to Lacks’ story demonstrates both Skloot’s empathy and her skill as a journalist and author.