The Immortal Life of Henrietta Lacks by Rebecca Skloot

The Immortal Life of Henrietta Lacks by Rebecca Skloot


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The Immortal Life of Henrietta Lacks by Rebecca Skloot DOWNLOAD IT FOR FREE HERE OR READ ONLINE
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.

HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.

The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.



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The 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 isn't 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.

“Thank you.”

“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.

This is an all-gold five star read.

Its actually two stories, the story of the HeLa cells and the story of the Lacks family told by a journalist who writes the first story objectively and the second, in which she is involved, subjectively. The contrast between the poor Lacks family who cannot afford their medical bills and the research establishment who have made millions, maybe billions from these cells is ironic and tragic. It has been established by other law cases that if the family had gone for restitution they would not have got it, but that's a moot point as they couldn't afford a lawyer in any case.

I have seen some bad reviews about this book. People who think that the story of the Lacks - poor rural African-Americans who never made it 'up' from slavery and whose lifestyle of decent working class folk that also involves incest, adultery, disease and crime, they just dismiss with 'heard it all before' and 'my family despite all obstacles succeeded so what is wrong with the Lacks?' I wonder if these people who not only totally can't see the wonderful writing that brings these people to life and who so lack in compassion themselves are the sort of people who oppose health care for the masses? As an extremely wealthy American tourist once put it to me, he had earned good health care by his hard work and success in life, it was one of the perks, why waste good money on, say, a a triple-bypass on someone who hasn't even succeeded enough to afford health insurance? That they were a drain on society, non-contributors and not the way America needed to go to move forward.

I don't think you can rate people by what they have achieved materially. Success depends a great deal on opportunity and many don't have that. Henrietta Lacks didn't have it and her children didn't have it, not even her grandchildren made much of a way for themselves, but the next generation, the great grandchildren - ah now they are going in for Masters degrees and maybe their children will be major contributors. The author intends to recompense the family by setting up a scholarship for at least one of them. All of us came originally from poverty and to put down those that are still mired in the quicksand of never having enough spare cash to finance an education is cruel, uncompassionate and hardly looking to the future.

HeLa cells have given us our future. They are the most researched and tested human cells in existence. All of us have benefited from the medical advances made using them and the book is recognition of what a great contribution Henrietta Lacks and her family with all their donations of tissue and blood, mostly stolen from them under false pretences, have made. Indeed one of the researchers who looks like having told a lot of lies (and then lied about that) in order to get the family to donate blood to further her research is still trying to get them to donate more. She's a hard-nosed scientist, with an excellent job and income and to her the Lacks are no more than providers of raw material.

Sometimes you can't make hard and fast rulings. No I don't think we should have to give informed consent for experiments to be done on tissue or blood donated during a procedure or childbirth - that would slow medical research unbearably. I don't think cells should be identifiable with the donor either, it should be quite anonymous (as it now is). However, there is only ever one 'first' in any sphere and that one does deserve recognition and now with the book, some 50 years after her life ended, Henrietta Lacks has it. Good on yer, Rebecca Skloot, you've done a good thing here.

When I was a graduate student in the field of Ethics, one of my favorite pedagogical strategies, as both a teacher and a student, was the case study. A good case study can make an abstract ethical issue more concrete. A really good case study can turn a deeply contentious issue into an opportunity for thoughtfulness and compassion; right and wrong (to the extent that those concepts even belong in the study of ethics) are nuanced by descriptions of circumstances or values or human need that can make it easier to see and hear and believe the ones on the other side(s) of an issue.

Often the case studies are hypothetical, or descriptions of actual cases pared to "just the facts, ma'am," without all the possible extenuating circumstances that can shape difficult decisions. For some students, this causes great angst. How could they be asked to make a judgment, especially one that might involve life or death, without knowing all the details? And of course, at the end of the lesson, everyone wants to know what really happened, how things turned out "in real life." On those rare occasions when we actually do know something of the outcome, it is clear that knowing what "really" happened almost never makes the decision easier, clearer, or less agonizing.

And that is what makes The Immortal Life of Henrietta Lacks so deeply compelling and challenging. It is the rare story of the outcome of a seemingly inconsequential decision by a doctor and a researcher in 1951, one that few at that time would have ever seen as an ethical decision, let alone an unethical one. A researcher studying cell cultures needs samples; a doctor treating a woman with aggressive cervical cancer scrapes a few extra cells of that cancer into a Petri dish for the researcher. The missing cells had no bearing whatsoever on the outcome of the woman's disease, so no harm done. A few weeks later the woman is dead, but her cancer cells are living in the lab.

The bare bones ethical issue at stake--whether it is ethically warranted to take a patient's tissues without consent and subsequently use them for scientific and medical research--is even now not a particularly contentious one...yet. Legally, the case law is settled: tissue removed in the course of medical treatment or testing no longer belongs to the patient. It is, in essence, refuse, and one woman's trash is another man's treasure. Ethically, almost all the professional guidelines encourage researchers to obtain consent, but they have no teeth (and most were non-existent in 1951 anyway). In reality, the vast majority of the tissue taken from patients is of limited use. But there are those rare times when a single person's cells have the potential to break open the worlds of science and medicine, to the benefit of millions--and the enrichment of a very few.

Such was the case with the cells of cervical cancer taken from Henrietta Lacks at Johns Hopkins University hospital. HeLa cells grew in the lab of George Gey. And grew. And grew, unlike any cell before it. Next, they were carried to a different laboratory at the University of Pittsburgh, where Jonas Salk used them to successfully test his polio vaccine, and thus the cancer that had killed Henrietta Lacks directly led to the healing of millions worldwide. Soon HeLa cells would be in almost every major research laboratory in the world. They traveled to Asia to help find a cure for hemorrhagic fever and into space to study the effects of zero gravity on human cells. Even today, almost 60 years after Henrietta's death, HeLa cells are some of the most widely used by the scientific community.

With such immeasurable benefits as these, who could possibly doubt the wisdom of Henrietta's doctor to take a tiny bit of tissue? But the "real" story is much more complicated. Henrietta Lacks was uneducated, poor and black. Her cancer was treated in the "colored" ward of Johns Hopkins. Her death left five children without their mother, to be raised by an abusive cousin. Should any of that matter in weighing the morality of taking tissue from a patient without her consent, especially in light of the benefits?

God knows our country's history of medical experimentation on the poor and minority populations is not pretty. Ironically, one of the laboratories researching with HeLa cells in the 1950s was the one at the Tuskegee Institute--at the very same time that the infamous syphilis studies were taking place. In light of that history, Henrietta's race and socioeconomic status can't help but be relevant factors in her particular case. But her children's status? What bearing does that have?

According to author Rebecca Skloot, in ethical discussions of the use of human tissue, "[t]here are, essentially, two issues to deal with: consent and money." Both become issues for Henrietta's children. The family didn't learn until 1973 that their mother's cells had been taken, or that they'd played such a vital role in the development of scientific knowledge. They spent the next 30 years trying to learn more about their mother's cells. As they learned of the money made by the pharmaceutical companies and other companies as a direct result of HeLa cells, they inevitably asked questions about what share, if any, they were entitled to. As Henrietta's eldest son put it, "If our mother so important to science, why can't we get health insurance?"

But even more than financial compensation, the family wants recognition--and respect--for their mother. They want the woman behind her contributions acknowledged for who she is--a black woman, a mother, a person with name longer than four letters. And they want to know the mother they never knew, to find out the facts of her death. In the lab at Johns Hopkins, looking through a microscope at her mother's cells for the first time, daughter Deborah sums it up: "John Hopkin [sic] is a school for learning, and that's important. But this is my mother. Nobody seem to get that."

Would a fully informed Henrietta Lacks have made the decision to give her tissue to George Gey if asked? Would her decision either way have had any affect whatsoever on her children's future lives? We'll never know, of course. But reading the story behind the case study makes these questions far more potent than any ethics textbook can. And as science now unravels the strains of our DNA--thanks in no small part to HeLa--these are no longer inconsequential questions for any of us. Perhaps we, too, like the doctors and scientists who have long studied HeLa, can learn from the case study of Henrietta Lacks.

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