The Immortal Life of Henrietta Lacks

I am still processing this book, 10 hours after I finished it.

This book, written by Rebecca Skloot, chronicles the story of Henrietta Lacks, a black woman who went to Johns Hopkins in the early 1950s to be treated for cervical cancer and ended up influencing the medical world in a grand way.

Henrietta was the source for the HeLa cells which are still today used in all parts of cell experimentation. HeLa cells are responsible for a large amount of cancer treatments used today and for medications used to treat conditions such as herpes and epilepsy. HeLa cells were used to test the Salk polio vaccine, and have also been used for gene-mapping.

One problem: Henrietta didn't give consent for her cells to be taken. She died of cancer in 1951, and her family didn't know that part of their wife, mother, sister and friend still existed in multiple petri dishes in laboratories throughout the world.

Skloot explains the importance of HeLa, and also tells the story of Henrietta's life and that of her family. The story is heartbreaking -- Henrietta's cells have provided valuable information to science, but her family members lived most of their lives without health insurance, waiting until an emergency situation occurred to seek medical help. Labs make money off of selling HeLa cells, but the Lacks family lives in poverty. The family tried at various times to sue Johns Hopkins and the lab where the cells were initially grown, but with their lack of education and funds, nothing ever happened.

Also included in the novel is a side story about Elsie, Henrietta's oldest daughter. Elsie was an epileptic and had some neuro-deafness. Henrietta and her husband, Day, were first cousins, and Day, a womanizer, brought syphilis home to Henrietta more than once; these two things probably contributed to Elsie's health issues. In the 1940s and 50s, epileptics were considered mentally retarded and they were committed. Elsie lived and died in the Crownville Negro Hospital for the Insane. She likely died due to neglect and being subjected to dangerous medical procedures. The chapter where Deborah, Henrietta's youngest daughter, finds out what happened to her sister had me in tears.

The story is sad enough, but the afterword caught me off-guard. Even after all the legislation and HIPAA , when you go to the hospital, any tissue removed from your body is the property of the hospital.

My daughter had her adenoids removed when she was 5. I assumed that her doctor examined them for abnormalities and then the hospital incinerated them. And in all honestly, that is likely what happened.

But what IF? What if the hospital sold or donated my daughter's adenoids to a lab? What if experimentation on those cells has resulted in a scientific discovery? I would want to know, absolutely, but according to current laws, the hospital or lab has no obligation to tell me. I always thought that if it came from my body or if it came from my children's body, it essentially belonged to me.

I guess not.