Sunday, August 28, 2016

The Immortal Life of Henrietta Lacks by Rebecca Skloot

HeLa is an immortal human cell line. It is immortal in the sense that the cells will live and grow in culture indefinitely. Since it was first cultured in 1951, the cell line has been an important part of medical research. It was used to develop vaccines for polio and HPV (Human Papilloma Virus). It has been used to study cancer, HIV (Human Immunodeficiency Virus), other diseases and drugs to treat them. HeLa cells have made medical science as we know it possible.

These cells came from a real person. Her name was Henrietta Lacks. She was a poor, black woman who went to Johns Hopkins Hospital for treatment of what turned out to be cancer. The cells were taken from a tumor by a doctor who was treating her.

Cancer took the life of Henrietta Lacks, but her immortality in the form of the cell line has caused a lot of pain and distress for her descendants. Rebecca Skloot tells the story of Henrietta, her family, the HeLa cells and their legacy in The Immortal Life of Henrietta Lacks.

It is a bit unusual in a book of biography or scientific history to write in the first person, but is the approach taken by Skloot. In order to emphasize the humanity of Henrietta, she tells a personal story of her research and the relationship she develops with the Lacks family, especially Henrietta’s daughter, Deborah.

This is important. It’s easy to get swept up in all the incredible results that have been produced from developing and testing with the HeLa cell line. It is harder to look at the individual lives on people, especially when those people are treated with little respect by the scientists and physicians who are benefiting from the cells taken from her mother.

These men saw little if anything wrong in what they did by taking the cells and growing them. They were doing what was legal at the time (and still legal) and in keeping with the ethical standards of the time. There is still much debate over the ethics of using human tissues in research. Though there are standards related to samples taken from humans, the only legally binding ones relate to federally-funded research. Issues of informed consent, ownership, and commercialization are still being worked out. If you’re a corpse, the law is fairly clear. If you’re a participant in a research study, legal and ethical standards assure some level of informed consent. If tissues are taken from a living patient for purposes of diagnosis or treatment, what can happen to those tissues is up for grabs.

I think this is a book worth reading. HeLa is an interesting scientific story. The ethical issues related to research using human tissues deserves more attention that it gets. I think the most important thing to remember is that the things we do affect human beings. Science, law and philosophy can become so abstract they are nearly pointless if we lose sight of how the things we say and do, individually and as a society, affect the lives of real people.

If you’re interested in this book, you may also be interested it

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown, 2010.