The Immortal Life of Henrietta Lacks by Rebecca SklootThe doorbell rang the other day and when I answered it, there was a very slick guy in a nice suit standing there and a limousine parked at the curb. He started shaking my hand and wormed his way into the house.
“Mr. Kemper, I’m John Doe with Dee-Bag Industries Incorporated. I need you to sign some paperwork and take a ride with me. Don’t worry, I’ll have you home in a day or two,” he said. Then he pulled a document out of his briefcase, set it on the coffee table and pushed a pen in my hand.
“Wait a second. What the hell is this all about?” I said as I tried to pick up the paper to read it, but Doe kept trying to force my hand with the pen down on it so I couldn‘t see what it said.
“Oh, that’s just legal mumbo-jumbo. You’d rather try and read your mortgage agreement than this old thing. Just put your name down and let’s be on our way, shall we?” he said.
There was a brief scuffle, but I managed to distract him by messing up his carefully gelled hair. As he shrieked and ran around looking for a mirror, I finally got to read the document.
“This is a medical consent form. What’s going on?” I demanded as I shook the paper at him. Once he had combed and smoothed his hair back into perfection, Doe sighed.
“Very well, Mr. Kemper. I guess I’ll have to come clean. Do you remember when you had your appendix out when you were in grade school?”
“Sure. That gave me one of my better scars, but that was like 30 years ago. Why are you here now?” I asked.
“You’re probably not aware of this, but your appendix was used in a research project by DBII,” Doe said.
“Really? I assumed it just got incinerated or used in the hospital cafeteria’s meatloaf special. Why would anyone want to study my rotten appendix?”
“Oh, all kinds of research is done on tissue gathered during medical procedures. Most people don’t know that, but it’s very common,” Doe said.
“OK, but why are you here now?”
“Well, your appendix turned out to be very special. It was secreting some kind of pus that no one had seen before. After many tests, it turned out to be a new chemical compound with commercial applications. So a patent was filed based on that compound and turned into a consumer product,” Doe admitted.
“That sounds disgusting. What was it used in? Because I want to make sure to never buy it,” I said.
“It’s the basis for the adhesive on Post-It Notes,” Doe said.
“Are you freaking kidding me? Post-It Notes are based on my old appendix?”
“I’m absolutely serious, Mr. Kemper. Now we at DBII need your help. Unfortunately for us, you haven’t had anything removed lately. So I have to get your consent if we’re going to do further studies,” Doe said.
“But you already got my goo-seeping appendix. I don’t have another one,” I said.
“True, but sales have been down for Post-It Notes lately. So after the marketing and research boys talked it over for a while, they thought we should bring you in for a full body scan. Maybe you’ve got a spleen giving out or something else that we could pull out and see if we could use it,” Doe said.
“This is pretty damn disturbing,” I said.
“Why? You’re an organ donor, right? Same thing,” Doe said.
“I don’t consider someone lucking into an organ if the Chiefs win a play-off game and I have a goddamn heart attack the same thing as companies making money off tissue I had removed decades ago and didn’t know anything about,” I said.
“Fortunately, the American government and legal system disagree. So how about it, Mr. Kemper? Will you come with me?” Doe asked.
“I dunno. What’s my end of this? You already owe me a fat check for the Post-Its.”
“Oh, no. You won’t get any money from the Post-Its, or if any future discoveries from your tissues lead to more gains.” Doe said.
“That’s complete bullshit!”
“Again, the legal system disagrees with you. But this is for science, Mr. Kemper. You don’t want to hold up medical scientific research that could save lives, do you?”
“It’s for Post-It Notes!”
“Maybe, but who is to say that the cure for some terrible disease isnt lurking somewhere in your genes? Could you live with yourself if you prevented crucial medical research just because you were ticked off that you didn’t get any money for your appendix? Remember that it’s not like you could have NOT had your appendix removed. At least, not if you wanted to keep living. And I highly doubt that you would have had the resources to have it studied and discovered the adhesive for yourself even if you would have taken it home with you in a jar after it was removed. We’re the ones who spent all that money to get some good out of a piece of disgusting gunk that tried to kill you. So shouldn’t we be compensated? What are you? Some kind of damn dirty hippie liberal socialist?” Doe said in disgust
“You’re a hell of a corporate lackey, Doe,” I said.
“Fine. I’ll do it,” I said as I signed the form. “But I want some free Post-It Notes.”
“No deal. Steal them from work like everyone else,” Doe said.
Obviously, I‘m a big fat liar and none of this happened, but I really did have my appendix out as a kid. Plus, my tonsils got yanked and I’ve had my fair share of blood taken over the years. What this book taught me is that it’s highly likely that some of my scraps are sitting in frozen jars in labs somewhere. Yours, too. If any of us have anything unique in our tissues that may be valuable for medical research, it’s possible that they’d be worth a fortune, but we’d never see a dime of it.
Henrietta Lacks couldn’t be considered lucky by any stretch of the imagination. A black woman who grew up poor on a tobacco farm, she married her cousin and moved to the Baltimore area. Her husband apparently liked to step out on her and Henrietta ended up with STDs, and one of her children was born mentally handicapped and had to be institutionalized.
In 1951, Henrietta was diagnosed with cervical cancer by doctors at Johns Hopkins. During her biopsy, cell samples were taken and given to a researcher who had been working on the problem of trying to grow human cells. Henrietta’s cancer spread wildly, and she was dead within a year. But her cells turned out to be an incredible discovery because they continued growing at a very fast rate.
The doctor at Johns Hopkins started sharing his find for no compensation, and this coincided with a large need for cell samples due to testing of the polio vaccine. The HeLa cells would be crucial for confirming that the vaccine worked and soon companies were created to grow and ship them to researchers around the world. Since then, Henrietta’s cells have been sent into outer space and subjected to nuclear tests and cited in over 60,000 medical research papers
Unfortunately, no one ever asked Henrietta’s permission and her family knew nothing about the important role her cells played in medicine for decades. Poor and with little formal education, Henrietta’s children were confused by what was actually done to their mother and upset when they learned that her tissue was part of a multi-million dollar industry that they‘ve received no compensation from..
Rebecca Skloot has written a fascinating book that clearly outlines why Henrietta’s cells were so important, why she went unrecognized for decades, the pain it’s caused her family, and the way that new medical discoveries over the last sixty years have opened a potential Pandora’s Box of legal and ethical issues regarding tissue collection, research, patents and money. This book brings up a lot of issues that we’re probably all going to be dealing with in the future.
Also posted at Kempers Book Blog.
The Immortal Life of Henrietta Lacks
I t is easy to forget, amid everything else she has achieved, that Oprah Winfrey is an Oscar-nominated actor in , for her role as Sofia in The Color Purple. In The Immortal Life of Henrietta Lacks Sky Atlantic , an adaptation of the book of the same title by Rebecca Skloot that remained on bestseller lists for six years, she reminds us why. It is her film from beginning to end. The doctors there took a sample of her malignant tissues as part of their search for a line of cells that were able to survive and reproduce outside the body, and so make possible medical experiments they were not able to perform on living bodies. Nor did they ever explain to her children whose blood they came and sampled, many times over the years, precisely what they were doing and why. Poor black bodies have a history of being common property.
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in —became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. The Immortal Life of Henrietta Lacks tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew. Also explore the resources found throughout this site for book groups, classrooms, and more. And click here to read excerpts of the book.
And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family — past and present — is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences. Henrietta was a poor black woman only 31 years of age when she died of cervical cancer leaving five children behind, her youngest, Deborah, just a baby.
It was the winner of the National Academies Communication Award for best creative work that helps the public understanding of topics in science, engineering or medicine. The book is about Henrietta Lacks and the immortal cell line , known as HeLa , that came from Lacks's cervical cancer cells in Skloot became interested in Lacks after a biology teacher referenced her, but didn't know much about her. Skloot began conducting extensive research on her and worked with Lacks' family to create the book. The book is notable for its science writing and dealing with ethical issues of race and class in medical research. Skloot said that some of the information was taken from the journal of Deborah Lacks, Henrietta Lacks's daughter, as well as from "archival photos and documents, scientific and historical research. It has also been translated into more than 25 foreign language editions.