Monday, September 27, 2010

Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta LacksThe Immortal Life of Henrietta Lacks Rebecca Skloot

In 1951, Henrietta Lacks died of cervical cancer. Doctors took the cells they had taken in her biopsy, and more collected after her death. They were the first cells scientists were able to keep alive in the lab. Not only did they stay alive, but they continued to divide and grow. The strain, named HeLa, has been the foundation of most medical advancement of the past 60 years. Her family had no idea.

While HeLa is famous, Henrietta Lacks is not. HeLa cells are a multimillion dollar industry. Her children can't afford health insurance.

This is multiple stories in one-- there is the story of Henrietta's life and death and her children's lives. There is the story of medical advancement-- what her cells allowed people to discover. There is a history of changing medical ethics and morals. There is also the story of Skloot finding the story. After years of mistreatment by the medical establishment, the Lacks family didn't trust her and didn't want to talk to her. It's the story of how Skloot proved herself trustworthy and what she learned.

One of the most heartbreaking things in the story is the family's search for answers. Most of them didn't understand the basics of cell science and didn't understand how their mother could be dead, but her cells still alive and growing. Her daughter, Deborah, wondered if her mother felt pain when her cells were injected with disease. One of the reasons Deborah (and the rest of the family) eventually trusted Skloot was that she promised them answers. She shared all of her discoveries about her life, her death, and what her cells have done with family-- something no one had ever bothered to do before (at least not in a way they understood.)

There is also the story of Henrietta's oldest daughter, Elsie. Elsie was epileptic and mentally retarded, probably as a result of neurosyphilis. After Henrietta died, Elsie was institutionalized, where she died at the age of 15. Part of Deborah's deal with Skloot wasn't just for her mother's story, but also her sister's. Deborah wanted to know what had happened to them.

The lack of information, and much of this story, is tied to race and class issues and the sickening history of the medical establishment and African-Americans.

One of the most chilling things is that, while many laws of changed, many haven't. If a doctor or hospital collects your cells for a biopsy or blood test or any of the other routine things we go in for, after the tests they can use the samples for research--including selling it. Disclosure that this might happen is recommended, but not required, and up to the institution.

Overall this is a fascinating book about a story that needs to told and known. It's gripping and Skloot explains the science parts really well for those of us without a background in medical research. The people jump off the page and grab you. You want to know more and want it to end differently, knowing that it won't. Highly recommended.

Read an excerpt here.

Book Provided by... my local library

Links to Amazon are an affiliate link. You can help support Biblio File by purchasing any item (not just the one linked to!) through these links. Read my full disclosure statement.

No comments: