This book recently grabbed me, so be prepared for a longer-than-usual post!
In 1951 in Baltimore, a young black woman named Henrietta Lacks went to Johns Hopkins Hospital (one of the few who treated blacks), was diagnosed with cervical cancer and started to receive radiation treatment. In those days the radiation wasn't aimed from the outside; rather, the radium was inserted and sewn into the affected area. (This was the treatment my mother received about that same time).
Before inserting the radium, the surgeon cut two dime-sized samples from the cervix, one of cancerous tissue and one of non-affected tissue. These samples were sent to the lab where Dr. George Gey had been trying, unsuccessfully, to to grow human tissues in a culture medium. Although Henrietta died from her cancer, Henrietta's cells thrived and grew. These were the first human cells to grow in the lab and the strain was named HeLa.
HeLa cells grew so aggressively that Gey was soon shipping the cells out to other labs around the world for free. Soon demand was outpacing his ability to supply. A company was set up which started to provide the cells commercially. Eventually, experimenters were able to grow cells from other donors too, but HeLa was the most prolific strain by far.
As the business of providing cells for experimentation grew, the American Type Culture Collection was established as a central storage place for pure original cell from all different strains. However, despite ATCC, cell purity was not maintained. A shocking analysis showed that the HeLa strain was so aggressive that if a different culture was contaminated by any HeLa cells, the other cells would die out and HeLa would take over. Thus the vast majority of research around the world had been carried out on HeLa cells, even when the researchers thought they were working with another strain. This showed just how incredibly unusual and prolific HeLa cells were and put into jeopardy many research results.
Meanwhile, the Lacks family knew nothing about their mother's cells being used - revolutionizing research and generating considerable profits - and had given no permission for such use. The Lacks were poor, uneducated people who had escaped from the poverty of rural Virgina to the booming factories of Baltimore during World War II, only to be thrown back into poverty when those factories closed after the war. When they learned of HeLa, they did not understand anything about cells, and were prone to thinking their mother might still be suffering through experimentation on her cells. There is a remarkable story of her daughter Deborah striving to read scientific literature and gain a sufficient understanding of biology to appreciate what had been going on. A visit to a lab where she saw her mother's cells under a microscope was a truly amazing epiphany for her.
The book traces the history of the concept of informed consent and points out that tissue removed from people to this day is available for hospitals to use for research (based on the consent form for the operation). There are many current examples of tissues being used for purposes for which informed consent was not acquired. The Havasupai tribe in Arizona reached a settlement with University of Arizona. They had donated DNA on the understanding it would be used to study diabetes, motivated by the fact that the tribe's incidence rate of diabetes was very high. However, the DNA was used to study schizophrenia and inbreeding.
The history of medical research and the black community is particularly ugly. When this story begins in the 50's, blacks were simply treated differently by the medical system. Johns Hopkins was notable in that it even admitted blacks, but they were relegated to a special 'coloured section'. The infamous Tuskegee study had recruited African American men with syphilis for a study of the disease - and denied them treatment even after it was known that penicillin would cure the disease. Even in the 60's, black women were sterilized in Mississippi through involuntary hysterectomies, sarcastically named 'Mississippi Appendectomies'.
Rebecca Skloot, the author, spent years tracking down the family (early reports had said HeLa cells came from Helen Lane), and gaining their trust enough to get detailed information and actual records to present the story.
I highly recommend this book. It's a remarkable story and provides food for thought on so many levels.