Saturday, February 27, 2010

Book Review: The Immortal Life of Henrietta Lacks (Part 1)

Not long after I moved to Washington, DC in 2004 to begin a post-residency fellowship in family medicine, I volunteered to lead a discussion at my new church about HIV/AIDS. The District has the highest prevalence of HIV infections in the U.S.: at least 3% of all residents over age 12 years were infected in 2009. The group that suffers the most is Black men, who have a prevalence of 6.5%, or slightly less than 1 in 15 men. Given these grim statistics, and the fact that my church's congregation is predominantly Black, I hoped that I might be able to make a difference by communicating the facts about this deadly but preventable illness.

Instead, I found myself almost immediately on the defensive. A man asked me where the HIV virus had originated. It was beside the point, I said, but most experts thought that the first infections had occurred in West Africa in the late 1970s. "Why does it have to be Africa?" demanded the man. "Everybody wants to blame the Africans. I heard that this plague was created by white scientists to kill off all the Black people." I ended up spending most of my talk trying to convince this man that HIV is in fact an equal-opportunity disease that targets no particular racial or ethnic group. But I wasn't sure that he had been convinced.

Frustrating as that experience was, it was hard to blame him for believing that HIV was the result of a racist plot. Only a generation before, the infamous Tuskeegee Syphilis experiment had ended. From 1932 to 1972, the U.S. Public Health Service studied 399 Black men with untreated syphilis in order to learn about the natural history of the disease. Even when penicillin became widely available, the scientists declined to offer the cure to the subjects, and even prevented the U.S. Army from providing it to men who were drafted during World War II and tested positive for syphilis. The scientists never told the men (illiterate sharecroppers who were grateful to be receiving any medical attention at all) the true purpose of the experiment, resorting to deceptions such as calling diagnostic lumbar punctures "Special Free Treatment." Before the study ended, 128 men had died of syphilis or its complications, and 19 of their children were born with congenital syphilis, which causes blindness, deafness, and facial deformities.

In The Immortal Life of Henrietta Lacks, science journalist Rebecca Skloot explores another unsavory chapter in the history of American medical science. In the early 1950s, Henrietta Lacks, a poor Black tobacco farmer from southern Virginia, visited the Johns Hopkins University Hospital for painful symptoms that turned out to be from an aggressive, and ultimately fatal, cancer of the cervix. (Although the Pap smear, a screening test for early cervical cancer, was introduced in 1943, it had not yet become part of routine medical care - which Henrietta didn't have access to anyway.) Before Henrietta's death, her gynecologist sent a sample of the tumor to his colleague George Gey, a scientist who was trying to grow large quantities of cells for use in laboratory experiments. Unlike the cells Gey had previously collected, Henrietta's cells never stopped growing and dividing - they became the first "immortal" human cell line. Over the past 60 years, the HeLa cell line, as it came to be called, "were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions."

A week ago, I talked to Rebecca Skloot during a reading at the East Columbia Library. In the second part of this post (to come next week), I will go into more detail about this remarkable book, which seamlessly interweaves three distinct stories: that of Henrietta Lacks, her descendants (particularly her daughter, Deborah), and the amazing scientific discoveries that would not have been possible without HeLa cells.