By Dorian Martin, I Start Wondering Founder
The Immortal Life of Henrietta Lacks* by Rebecca Skoot is a nonfiction book that combines all of the elements of a tense thriller that touches on the United States’ challenges with race relations, class misunderstandings, capitalism, and biomedical science.
Yet I found this book especially insightful and troubling on the micro level. That’s because many people will face a medical condition at some point in their lives that involves a treatment discovered because of Lacks’ cells. Yet Lacks, who died in 1951 of a particularly aggressive form of cervical cancer, never consented to have her cells collected and her family had no knowledge of it until Skoot interviewed them for the book.
Why should you add this book, which was first published in 2010, to your reading list? Here is my list of pertinent a-ha revelations:
A Tiered Medical System
The American medical profession has historically created different treatment levels for different races. While there is hope that this divide is closing, this book offers important insights into why different groups distrust the healthcare industry.
Understanding the Biomedical Science Industry
Henrietta Lacks’ cells are still a prominent fixture in the world’s research labs today, even though she died in 1951. In addition to playing a major part in the discovery of a cure for polio, HeLa – the name researchers gave to Lacks’ cells – continues to have a role in the development of treatments for a variety of conditions, ranging from AIDS to cancer.
Educational Differences Lead to Misunderstandings
The book describes many areas of miscommunication between researchers and the Lacks family, who did not have college educations. The researchers made many assumptions that Henrietta’s husband and children (who were adults by the time the researchers talked to them) would understand cells, cloning, biomedical science, biomarker testing, and informed consent.
Skloot illustrates why it’s important for people who are undergoing research to continue to ask questions until they truly understand the ramifications of their consent – and for researchers to do a better job of speaking in terms that are easily understood by the general public.
What is the Ethical Line?
This book definitely hits on an important subject and one that we continue to grapple with: should someone “own” their cells and get financial benefit if their cells lead to medical breakthroughs, such as the discovery of drugs and treatments? Or should these cells be used to primarily help improve people’s health by finding breakthrough drugs and treatments?
The Lacks family struggled with this conundrum since Henrietta’s cells were taken from their mother while she was still alive and without her consent, grown in a lab, and then shipped to different labs across the globe. Eventually, other labs were able to reproduce and charge for cells. The Lacks family never received a penny.
So what are the ethics of this situation? That’s a good question – and one that we should all grapple with since any biological material taken from us during surgery or while undergoing treatment could be sent to a lab for use.
Advocating for Our Health
This is an intelligent book that remains pertinent for our times and should be used to inform the views of policymakers, researchers, educators, and community leaders. It’s one that you’ll debate over dinner, think about during a medical procedure, and be thankful for when the latest drug for a deadly disease or vaccine for the current pandemic is announced.
I feel that contemplating the important topics in this book can lead to a better understanding of what’s truly causing much of society’s problems, especially those behaviors and actions that prove in hindsight to be shortsighted. This book also invites each of us to be our own advocates for our healthcare choices.
*Proceeds from the purchase of these books will be used to support I Start Wondering's programming for women who have reached mid-life and beyond.
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