HeLa: What’s In A Name

I recently reconnected with a friend after 30+ years of separation. While catching up on the lost decades, he eventually revealed his current situation: homebound and dying of non-Hodgkins Lymphoma. His one pleasure left in life, though, is reading: 4-5 books a week, sometimes as many as one a day. The first one he urged on me was this biography by Rebecca Skloot. He warned, “Prepare to be blown away.” I was.

Henrietta Lacks was a black woman born into poverty in 1920 and who was buried in an unmarked grave somewhere on the family plot in Clover, Virginia, in 1951 after 6 agonizing months of relentlessly metastasizing cervical cancer. She also became the unwitting wellspring of human cells that literally refused to die. The tissue samples extracted from her at Johns Hopkins Hospital (where indigent patients could get free medical treatment when she travelled there in the 1940’s and 50’s) have spawned multibillion industries and been behind innumerable advances in medicine since her unheralded demise.

The moment researchers realized Lacks’s cells were unlike any others that were routinely placed in culture to study (but which inevitably died within days) bears quoting at length for its “Mr Watson, come here. I need you.” import:

“…two days after Henrietta went home from the hospital, [lab technician] Mary [Kubicek] saw what looked like little rings of fried egg white around the clots at the bottoms of each tube. The cells were growing, but Mary didn’t think much of it – other cells had survived for awhile in the lab.

“But Henrietta’s cells weren’t merely surviving, they were growing with mythological intensity. By the next morning they’d doubled, Mary divided the contents of each tube into two, giving them room to grow, and within twenty four hours, they’d doubled again. Soon she was dividing them into four tubes, then six. Henrietta’s cells grew to fill as much space as Mary gave them.

“Still, [lab director George] Gey wasn’t ready to celebrate. ‘The cells could die any minute,’ he told Mary.

“But they didn’t. They kept growing like nothing anyone had seen, doubling their numbers every twenty four hours, stacking hundreds on hundreds, accumulating by the millions…they grew twenty times faster than Henrietta’s normal cells, which died only a few days after Mary put them in culture. As long as they had food and warmth, Henrietta’s cancer cells seemed unstoppable.

“Soon, George told a few of his closest colleagues that he thought his lab might have grown the first immortal human cells.”

The cells of the long-dead Henrietta Lacks have been cut in half to prove cells can live without their nuclei; used to test the side effects of steroids, chemotherapy drugs, hormones, vitamins and environmental stress; they’ve traveled into space to observe the effects of weightlessness on human tissue; they were used to research hemorrhagic fever (that was killing US troops in droves during the Korean War). In 2010 (year of the book’s publication), a vial of HeLa (the scientific name given to Henrietta’s cells) was available for shipment for $167; the amount of HeLa tissue that has been sold and shipped to labs worldwide over the decades is now incalculable (as are the profits).

And therein lie the other themes of this highly readable book (Skloot’s first): informed patient consent and the legal battle over the questions, “Who holds the rights to a patient’s tissue that could ultimately lead to revolutionary new treatments and cures?” and “Should patients’ refusal — absent compensation — to permit use of their biological material, outweigh the scientific community’s need to have unfettered access to tissue that might lead to a breakthrough that saves millions of lives?” Thorny issues that have gone all the way to the US Supreme Court.

The book is as much about the author’s decade-long persistence in tracking down and winning the trust of Henrietta’s siblings, offspring and friends in order to flesh out the story of this wife and mother who unknowingly changed the course of scientific research, as it is about the medical advances that can be attributed to HeLa.

The benefits of applying the book to today’s world would seem to be self-evident. What I also took away from the Lacks family saga was how they have — for the most part — struggled to resist the disintegration of the black family in America over the last half-century. I stopped repeatedly to wonder, “Why aren’t stories like Henrietta’s being taught to young black people, instead of hero-worship of rappers and gangstas?” Also palpable in Ms. Skloot’s book was the lingering suspicion and resentment felt by Henrietta’s heirs and descendants who’ve never received a dime in royalties, although her cells have made the fortunes of many others.