I could write a book about this book. I'll try not to.
I've been thinking lately that it has been a while since I read a gripping but informative non fiction book. And here's the one that fit the bill. I'll ask that you at least read my full review before determining whether or not you think you are interested in reading this book. Trust me, it is powerful, and moving.
I bet you've never heard of Henrietta Lacks, right?
Henrietta Lacks was a young woman, the mother of five children, who grew up poor on a Southern tobacco farm. Born on 1 August 1920, she died on 4 October 1951. At the age of 31 she was diagnosed with a particularly virulent form of cervical cancer. At the time of her surgery, her doctor, of course, took cells to examine them.
Henrietta's doctor, Jones, performed a study with TeLinde, hoping to distinguish differences between two types of cervical cancer. TeLinde wanted to grow living samples from normal cervical tissue for further study. He contacted George Gey. George Gey, his wife, and his colleagues hoped to grow the first-ever immortal cells in their lab. They did.
Those cells were given the cell-line name of HeLa; the first two initials of each of her names.
The problem? Henrietta wasn't asked if her cells could be used for research. It was twenty years after her death that her family found out about the use of her cells in science. The situation which arose is now one of hot debate. Tissues do not fall under the same laws as our actual bodies. There are no actual laws preventing the use of our tissues once they have been willingly removed and left behind. Most hospitals don't sufficiently give notice to their clients that their tissues can, and will likely be used in such a way. "In 2006, some seven hundred new mothers found out that doctors had taken their placentas without consent to test for abnormalities that might help the hospital defend itself against future lawsuits over birth defects." Now, wouldn't you rest easier if you'd been one of those people who want to take your baby's placenta home to plant beneath a tree? I think I would. Really.
What happens to cells or other unneeded or unwanted parts of your body which you leave behind in a lab or hospital? Are they being used for research? Are they being used nobly? Are they being used for evil? Are resarchers or large for-profit companies making millions of dollars from them? These are the questions that were raised by Henrietta's family. The questions remain unanswered.
Another problem was later realized. Henrietta's cells were unusual in that they grew so easily. After much time it was finally determined that her cells grew with such wild abandon because of her cancer and other health issues. Her cells are still unusual for their ability to continue growing with such ease. From that it was discovered that cancer cells contain a protein called telomerase which prevents them from aging and dying in the manner of normal, healthy human cells. And so, her cell line is still alive today.
Over the years her family finally came to grips with the fact that the cells were taken without permission having been given. They also, reluctantly, have come to realize they are not going to benefit financially even though the amount of cells now existing, directly from the initial samples, would weigh 50 million metric tons. Yes, you read that correctly.
The good that arose from the unethical use of her cells, however, is essentially unfathomable.
In fact, the Pap Smear test was developed because of knowledge based on the use of her cells in the lab. The first HeLa factory was originated precisely for the ability to research a cure for polio.
The cells were used to prove that the vaccine would be safe and effective and wasn't offered to children until after that. HeLa cells were used for neutralization tests as proof that vaccinated children were, indeed, immune to polio after injection of the vaccine. Previously, monkey cells had been used. That was an expensive proposition. Being able to use an "immortal" cell-line saved millions of dollars.
The evil in medical research has been around since the first stirrings of curiousity. Graves have been robbed, people infected with disease on purpose so that researchers could learn from it; slaves were taken in the night, Jews from Nazi camps were used as live subjects. People being tricked into joining research studies without being given full disclosure is something that is still ocurring. I could go on, but I won't. With today's technology, the threat of bioterrorism is scary.
Further good that has arisen from use of Henrietta's cells is the mapping of the human genome. Two genes for breast cancer have been discovered. However, the company that discovered them has patented the information. Many other companies who were doing research along the same avenue then gave it up as they couldn't fight the legal issues that would have arisen. Are we perhaps now losing information because business has entered into the world of research? Once again, the good and bad go hand in hand. "There is some evidence to support (this) claim. One survey found that 53 percent of laboratories had stopped offereing or developing at least one genetic test because of patent enforcement, and 67 percent fel tpatents interfered with medical research."
"In 1999 The Rand Corporation (estimated) that more than 307 million tissue samples from more than 178 million people were stored in the US alone. ... "This number, the report said, was increasing by more than 20 million samples each year. The samples come from routine medical procedures, tests, operations, clinical trials, and research donations. They sit in lab freezers, on shelves, or in industrial vats of liquid notrogen. They're stored at military facilities, the FBI, and the National Institutes of Health. They're in biotech company labs and most hospitals. Biobanks store appendixes, ovaries, skin, sphincters, testicles, fat, even foreskins from most circumcisions. They also house blood samples taken from most infants born in the United States since the late sixties, when states started mandating the screening of all newborns for genetic diseases."
And what of that? What is being done with the information the government is taking from our children at birth. Can the information be used against them or us in the future? Could we be denied insurance, or worse, even medical care, if it is known that we are due to be even sicker in the future, from diseases we don't even know that we have?
"Lori Andrews, director of the Institute for Science, Law and Technology at the Illinois Institute of Technology, wants something more drastic: she has called for people to get policymakers' attention by becoming "conscientious objectors in the DNA draft" and refusing to give tissue samples."
In opposition, '"David Korn, vice provost for research at Harvard University, argues that giving patients control over their tissues is shortsighted. "Sure," he says, "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." To illustrate this, Korn points to the Spanish flu pandemic. In the 1990s, scientists used stored tissue samples from a soldier who died in 1918 to recreate the virus's genome and study why it was so deadly, with hopes of uncovering information about the current avian flu." This intriguing line of thought continues on page 304 in the book. I urge you to read the book for yourself.
But I will include one more thoughtful portion here: "Science is not the highest value in society," Andrews says, pointing instead to things like autonomy and personal freedom. "Think about it," she says. "I decide who gets my money after I die. It woudln't harm me if I died and you gave all my money to someone else. But there's somethign psychologically beneficial to me as a living person to know I can give my money to whoever I want. No one can say, 'She shouldn't be allowed to do that with her money because that might not be most beneficial to society' But replace the word with money in that sentence with tissue, and you've got precisely the logic many people use to argue against giving donors any control over their tissues.
Five Reasosn http://www.popsci.com/science/article/2010-01/five-reasons-henrietta-lacks-most-important-woman-medical-history
As an aside I will add that I when I was very young my dad came home from work each day and sat down to watch the early news report on television. I vividly remember hearing the word cancer and President Nixon being involved with the story. It has stuck with me through the years. I even remembered the general story correctly. Skloot notes on page 169: "Just three weeks after Henrietta's name was first published, Richard Nixon signed the National Cancer Act into law and launched the War on Cancer, designating $1.5 billion for cancer research over the next three years. In a move many believe was intended to distract attention from the Vietnmam War, Nixon announced that scientists would cure cancer within five years, just in time for the United States Biecntennial." Hmmm...he stole President Kennedy's tactic from the space race. Too bad it didn't work the way he projected. Bummer, that.
So far, I've probably made the book sound sort of boring. But it isn't! The author has creatively intertwined all the science with a tale of heartbreak, forgiveness, love, and legacy. She tells us about Henrietta Lacks and many details of the lives of her descendants. Deborah, one of Henrietta's five children, took the place of matriarch in the family and kept them all as together as was possible. I will quote two of the most moving portions of the book now, to end my review:
Deborah: "When he (Lurz) asked if she was okay, her eyes welled with tears and she said, "Like I'm always telling my brothers, if you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different."
Over more than a decade, the long-held atheism of the author of this book, Rebecca Skloot, was even challenged. She was handed a Bible to read aloud from for the first time in her life after a powerful moment between Henrietta's daughter, Deborah, and Deborah's cousin, Gary. The passage follows:"'Those who believe in me will live, even though they die; and those who live and believe in me will never die."
"Gary flipped to another passage for me to read: "Someone will ask, 'How can the dead be raised to life? What kind of body will they have?' You fool! When you plant a seed in the ground it does not sprout to life unless it dies. And what you plant is a bare seed...not the full-bodied plant that will later grow up. God provides that seed with the body he wishes; he gives each seed its own proper body."
"'Henrietta was chosen,' Gary whispered.