The Immortal Life of Henrietta Lacks tells the intertwined stories of Henrietta, a poor, black woman who died of cervical cancer, the ongoing saga of her cells and the struggles of the remaining Lacks family.  Henrietta was mourned by her husband and children, who were initially unaware that her cells were used for amazing medical advances such as the polio vaccine, chemotherapy treatments and advancements in genetics.  Her cells were mass produced and sold to laboratories while her family lived in poverty, could not afford health care and tried to understand how Henrietta’s cells became a legacy, a gift to the world.

Rebecca Skloot, the author, learned about the HeLa cells in 1988, in a highschool science class.  Years later, she would spend her student loans and use her credit cards to meet the Lacks family, travel and research the story. Over ten years, the author became close to the family and helped to inform them, support them and tell the story of HeLa.

Henrietta grew up in the home house (a former slave cabin) in Clover, Virginia.  Her mother had died and the family of 10 children was split among relatives.  She grew up with her cousin Day, sharing a bedroom with him since the age of 4, until they started having children together.  The couple had 5 children including Lucile who was known as “simple” or “touched”.  Lucille had seizures and, after her mother was hospitalized, ended up being institutionalized (leaving another mystery for the family to investigate years later).

Henrietta felt a “knot” in her womb but when she ended up pregnant with her 5th child, she stopped talking about the knot.  Four months after baby Joseph was born, she started bleeding, felt a lump on her cervix and had a biopsy at Johns Hopkins Hospital.  The physician had never seen a cancer lesion like it, he excised a section and sent it to the lab where it was diagnosed as cancer.  Henrietta returned to have treatment, which at the time, was to sew radium to the surface of her cervix but not before the doctor excised another slice of her tumour without her permission.

The cell sample was taken to the lab.  The scientists were trying to grow cells but despite their lack of success with other cells, the HeLa cells grew, and grew, and grew.  The researchers discovered that her cells had not only survived but were multiplying at a very quick pace.

Sadly, Henrietta died at the age of 31, filled with tumours and suffering with intractable pain.  The pain medications did not relieve her suffering and her kidneys could no longer filter the toxins from her body.  She died a tragic death of uraemia secondary to cancer of the cervix.

While the family mourned Henrietta, her cells continued to multiply, became a multi-million dollar industry and were used for research testing the polio vaccine, studying genetics, testing the effects of pharmaceuticals, steroids, chemotherapy, hormones and vitamins.  Her cells were unknowingly injected into cancer patients, healthy patients and prisoners.  Her cells are responsible for the HPV vaccine which protect young women from HPV.

For many years, the family had no idea that Henrietta’s cells had been taken, studied, sold and used for research.  They lived in poverty, had little education, struggled to look after their own families and subsequent generations of the Lacks family got in trouble with the law.  The family could not afford their own medical care despite the advances made due to their mother.  The family was taken advantage of by researchers, by journalists and by a fake lawyer who tried to convince them to sue the hospital leaving them hesitant to trust anyone.  Miraculously, the family gave  chance to Rebecca Skloot, a young white woman who wanted to write a book.  Slowly the family began to trust Rebecca as she investigated for a decade and uncovered the truth about the HeLa cells, learned about the advances due to her cells and investigated the short life of Henrietta’s daughter (who had likely been affected by syphillis).

Rebecca Skloot is a science writer.  She has taught non-fiction writing to university students and set up a scholarship fund for the descendants of Henrietta Lacks.  This book was her first and has remained on best seller lists for more than seven years according to her website.  The story lives on in an HBO movie starring Oprah Winfrey as Henrietta’s daughter, Deborah as seen in the movie trailer.

This is an amazing book to read.  This was my second time reading about Henrietta, in preparation for book club and I am looking forward to a lively discussion.  As a health professional, it was shocking to read about the lack of informed consent and the dreadful final days of Henrietta.  This a book that should be studied by health professionals during their training to reinforce the importance of informed consent and ethical treatment.