Sunday, October 2, 2011

Book Review: "The Immortal Life of Henrietta Lacks"

"The Immortal Life of Henrietta Lacks" by Rebecca Skloot was a fascinating book. It focused on the woman, Henrietta Lacks, whose cells have been used for decades in medical research including the development of the polio vaccine, advances in cancer research, in vitro fertilization, cloning and gene mapping.  Her cells were even sent into space so researchers could study the effects of space travel and how cancerous and noncancerous cells responded to zero gravity.

Henrietta Lacks was a black woman raised in Clover, Virginia where her family was tobacco farmers. She married David Lacks at a young age and the family later migrated north to Baltimore for work at a steel mill. Henrietta had five children: Lawrence, Elise, David "Sonny" Jr., Deborah and Joseph. In the 1950s she developed cervical cancer. During her treatment for cancer at John Hopkins Hospital, a doctor took two tissue samples from her cervix: one from her tumor and one from the healthy cervical tissue. As the author explains, "no one had told Henrietta that [the doctor] was collecting samples or asked if she wanted to be a donor ... ."  These samples were sent to John Hopkins lab where they grew with "mythological intensity."  Henrietta's cells, unlike others that usually died within a few days, multiplied and continue to grow to this day.  Scientist called them "immortal human cells" because they never died.  As a result, the cells named "HeLa" after Henrietta's initials of her first and last name, were sent all over the world to scientists, hospitals and laboratories for medical research.

While her cells continued to thrive, unfortunately Henrietta died from cancer on October 4, 1951. Neither Henrietta nor her family knew about the cells that were taken during her treatment or the widespread use of her cells in research. A "HeLa factory" was created at Tuskegee Institute which produced trillions of HeLa cells each week. As the demand for the cells grew, the production of HeLa cells became a for-profit industry with the creation of corporations now growing and distributing the cells to scientists. In the past, the cells were given away for free, but now they were being "bought and sold for research."

For years, Henrietta's name had been kept a secret by the doctors at John Hopkins. Early news articles misidentified her as Henrietta Lakes, Helen Lane or Helen Larson. It wasn't until 1971 in an article in a medical journal that her real name was published along with a picture of Henrietta. However, it wasn't until 1973 that the Lacks family learned about Henrietta's cells being used in science research around the world. Through a casual conversation with a friend's brother-in-law who worked at the National Cancer Institute, Bobbette Lacks (wife of Henrietta's son Lawrence) learned that her mother-in-laws cells were still alive and were being bought and sold for research.

The author describes the discovery as "a nightmare" for the family. "[H]opkins had part of Henrietta alive and scientists everywhere were doing research on her and the family had no idea." The family's fear was based on long-standing rumors of "night doctors" from Hopkins and other hospitals who abducted black people to conduct research.  These rumors were kept alive by real tragedies such as the Tuskegee syphilis study. Bobbette told Lawrence who called Hopkins stating "I'm calling about my mother, Henrietta Lacks -- you got some of her alive in there." When the hospital couldn't provide him any information, he didn't know who else to call.

The book explores the journey of the Lacks family, lead by Henrietta's daughter Deborah, to find out what happened to their mother, what is being done with her cells, and why no one bothered to tell the family. As Deborah wrote in her journal "But I always thought it was strange, if our mother cells done so much for medicine, how come her family can't afford to see no doctors? Don't make no sense. People got rich off my mother without us even knowin about them takin her cells, now we don't get a dime."  Deborah wrote at first she was mad, but now "I just want to know who my mother was."

The book examines two major issues of consent and money. As the author explains, storing blood and tissues for research does not legally require informed consent because existing laws do not apply to tissue research.  While most institutions still choose to get permission, there's no uniformity of the practice. This has raised ethical, moral and legal questions. Some argue there should be laws granting people the right to control their tissues. However, courts that have tried the issue ruled that when tissues are removed from a person's body, with or without consent, any claim the person has to ownership vanishes. Thus, when an individual leaves blood or tissue in a doctor's office or lab, it is considered abandoned waste and anyone can use them or sell them.  Those against giving "tissue rights" argue that doing so would hinder medical research by "restricting access to the necessary raw materials."  While there are no "tissue rights" laws, other laws that have developed include the Federal Policy for the Protection of Human Subjects that requires informed consent for research on humans; the Genetic Information Nondiscrimination Act (GINA) which prohibits the use of genetic tests to discriminate against person in employment; and the Health Insurance Portability and Accountability Act (HIPAA) which protects a person's private confidential medical information.

As for the issue of money, tissue research is already commercialized. The debate centers on who should profit -- companies or the individuals who are supplying the tissue.  Currently, it appears only the corporations are receiving money.  The Lacks family never sued anyone. It appears what they really desired was recognition for their mother's contribution to science. As her son Sonny stated "I'm proud of my mother and what she done for science. I just hope Hopkins and some of the other folks who benefited off her cells will do something to honor her and make right with the family."

This book does a great job at informing the public about Henrietta's contribution to science, and hopefully others will read it and discover her remarkable story.