I had the pleasure of being one of the fact-checkers and proof reviewers on Rebecca Skloot's book, The Immortal Life of Henrietta Lacks, and I'm pleased to see that it is now on the NY Times Bestseller list and that Rebecca is well into her book tour. Rebecca retells the story of Henrietta Lacks and her family and masterfully weaves it into compelling story, that rivets your attention and illustrates just how far we've come in and how far yet we have to go in human subject experimentation. Here is a short excerpt to whet your appetite:
[On January 29, 1951, David Lacks sat behind the wheel of his old Buick, watching the rain fall. He was parked under a towering oak tree outside Johns Hopkins Hospital with three of his children—two still in diapers—waiting for their mother, Henrietta. A few minutes earlier she'd jumped out of the car, pulled her jacket over her head, and scurried into the hospital, past the "colored" bathroom, the only one she was allowed to use. In the next building, under an elegant domed copper roof, a ten-and-a-half-foot marble statue of Jesus stood, arms spread wide, holding court over what was once the main entrance of Hopkins. No one in Henrietta's family ever saw a Hopkins doctor without visiting the Jesus statue, laying flowers at his feet, saying a prayer, and rubbing his big toe for good luck. But that day Henrietta didn't stop.
She went straight to the waiting room of the gynecology clinic, a wide-open space, empty but for rows of long, straight-backed benches that looked like church pews.
"I got a knot on my womb," she told the receptionist. "The doctor need to have a look."
For more than a year Henrietta had been telling her closest girlfriends that something didn't feel right. One night after dinner, she sat on her bed with her cousins Margaret and Sadie and told them, "I got a knot inside me."
"A what?" Sadie asked.
"A knot," she said. "It hurt somethin' awful—when that man want to get with me, Sweet Jesus aren't them but some pains."
When sex first started hurting, she thought it had something to do with baby Deborah, who she'd just given birth to a few weeks earlier, or the bad blood David sometimes brought home after nights with other women—the kind doctors treated with shots of penicillin and heavy metals.
About a week after telling her cousins she thought something was wrong, at the age of 29, Henrietta turned up pregnant with Joe, her fifth child. Sadie and Margaret told Henrietta that the pain probably had something to do with a baby after all. But Henrietta still said no.
"It was there before the baby," she told them. "It's somethin' else."
They all stopped talking about the knot, and no one told Henrietta's husband anything about it. Then, four and a half months after baby Joseph was born, Henrietta went to the bathroom and found blood spotting her underwear when it wasn't her time of the month.
She filled her bathtub, lowered herself into the warm water, and slowly spread her legs. With the door closed to her children, husband, and cousins, Henrietta slid a finger inside herself and rubbed it across her cervix until she found what she somehow knew she'd find: a hard lump, deep inside, as though someone had lodged a marble the size of her pinkie tip just to the left of the opening to her womb.
Henrietta climbed out of the bathtub, dried herself off, and dressed. Then she told her husband, "You better take me to the doctor. I'm bleeding and it ain't my time."
Her local doctor took one look inside her, saw the lump, and figured it was a sore from syphilis. But the lump tested negative for syphilis, so he told Henrietta she'd better go to the Johns Hopkins gynecology clinic.
The public wards at Hopkins were filled with patients, most of them black and unable to pay their medical bills. David drove Henrietta nearly 20 miles to get there, not because they preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even if it meant they might die in the parking lot.
When the nurse called Henrietta from the waiting room, she led her through a single door to a colored-only exam room—one in a long row of rooms divided by clear glass walls that let nurses see from one to the next. Henrietta undressed, wrapped herself in a starched white hospital gown, and lay down on a wooden exam table, waiting for Howard Jones, the gynecologist on duty. When Jones walked into the room, Henrietta told him about the lump. Before examining her, he flipped through her chart:
Breathing difficult since childhood due to recurrent throat infections and deviated septum in patient's nose. Physician recommended surgical repair. Patient declined. Patient had one toothache for nearly five years. Only anxiety is oldest daughter who is epileptic and can't talk. Happy household. Well nourished, cooperative. Unexplained vaginal bleeding and blood in urine during last two pregnancies; physician recommended sickle cell test. Patient declined. Been with husband since age 14 and has no liking for sexual intercourse. Patient has asymptomatic neurosyphilis but canceled syphilis treatments, said she felt fine. Two months prior to current visit, after delivery of fifth child, patient had significant blood in urine. Tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialist for ruling out infection or cancer. Patient canceled appointment.]
To read more excerpt, click here. You can also hear Terry Gross interview Rebecca about her book here on NPR.
From issues in medical paternalism to the dark history of experimentation on African Americans and legal and ethical battles over whether or not we control the stuff we are made of (as in the Moore vs California Bd of Regents case, which is a thorn in the side of most bioethicists I know), this book rocks!
I'm recommending it for the WBP Summer Book Club!