Consider the last time you visited the doctor. Perhaps you gave a blood sample, tinkled in a cup or they biopsied your signature mole. Later you received a phone call or letter with your results. The lab may have used only a fraction of your sample for its testing. What happened to the rest of your blood, urine, cells? It’s likely you’ve never given that tissue a second thought, merely sighed relief at the news “normal” and gone about your business, or perhaps you got news that stopped you in your tracks and spun your life in a new direction, your to-do list citing “battle this disease” every day. Either way, you probably assumed your tissue was respectfully disposed of, since the medical profession is always professional and courteous.

What if you discovered your sample was frozen and used for experiments? What if you learned, not from your doctor or the researcher, but from a reporter, that your cells were famous and instrumental in creating the polio vaccine, in vitrofertilization, cloning, gene mapping and are still being used in cancer research? What if I told you others had made careers from using your cells, made fortunes, made themselves famous, even won medals, while you remained uncompensated and uninformed?

I would say, “Nice to meet you, Henrietta Lacks!”

The Immortal Life of Henrietta Lacks tells the true story of a poor black woman diagnosed with an extremely aggressive cancer by the doctors at John Hopkins Hospital. John Hopkins hospital and medical school was chartered to treat anyone without concern for their color, religion or ability to pay. Somewhere along the way Hopkins’ vision did not quite translate to the staff. Its mantra evolved into, “if the people aren’t going to pay, at least we can use their tissue for research” and set a precedent upheld decades later by the California Supreme Court.

Author Rebecca Skloot writes a story as dramatic as a movie. She paints a sad picture of the uneducated Lacks family and their struggle to uncover the truth about their relative’s cells as well as the implications for their own health. Many reporters before Skloot tried to investigate the Lacks’s story, but failed to get past the family’s suspicion that someone else was trying to chump the Lackses for money. Skloot, with her white skin and educated speech, took months just to get an interview with the family. (“I had enough ‘a you people,” David Lacks said and then hung up on her.) Her own story is woven in with that of Henrietta Lacks, and I marveled at her ability to stay the course and take what was often outright abuse, both verbal and physical, for her craft, as well as to find justice for the Lacks family.

Some might say after reading this book, “Somebody owes that family a whole lot of money.” Yet thousands of other patients at John Hopkins and other medical facilities also had tissue samples taken without consent and used for research. Henrietta Lacks’s “HELA” cells, because they grew so aggressively inside her, were unique and became a kind of base structure for millions of cell experiments. Yet surely, if it is wrong to take and use someone’s cells without her knowledge or consent, it is just as wrong to do so whether the subsequent experiment fails or succeeds. The element of financial gain only makes the advantage taken seem all the more obscene. And yet, to the very end, many of the researchers involved defended their practices. “Sure, consent feels nice. Letting people decide what’s going to happen with their tissue seems like the right thing to do. But consent diminishes the value of tissue.” (David Korn, vice provost for research at Harvard University, who gave the Spanish flu pandemic as an illustration of his point.)

It’s a fascinating tale – part biology, part history, part politics, part of it family drama. It makes you lie in bed at night and think. It makes you wonder where that mole is now.

Book by: Rebecca Skloot

Review by: Jacqueline Thompson Graves