She Revolutionized Biology, without ever Knowing
From Megan Rokop
 “When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes…”
— Statement issued by the California Supreme Court, 1991
The first human cells to ever grow and divide in the lab were taken without consent in 1951 from a 31-year-old African American woman named Henrietta Lacks, who died shortly thereafter from cervical cancer. The cells were named “HeLa cells” after her, and they continue to be the most commonly used human cells in biology labs world-wide. These cells have been sold over the past 60 years for indescribable amounts of money, and have had more scientific publications written about them than any other cells.
Henrietta’s husband and children remained unaware that anyone was growing, studying, or selling her cells for 22 years after they were taken. Her daughter-in-law found out serendipitously in 1973 while having a casual conversation with a friend of a friend who worked in a lab. Over the next year, scientists (curious to know more about Henrietta’s DNA) approached her husband and children on multiple occasions to take cells from them, again without proper informed consent. The last of these samples was collected days before June 30th 1974, when the Common Rule went into effect in the US, which requires informed consent for all federally funded human-subject research.
Even with the Common Rule in place, it remains the case today that—if you get a sample taken for medical reasons (e.g. a blood draw or a tissue biopsy)—the leftover cells can be used by researchers without your consent, provided that they do not know your identity. In fact, many hospitals sell their leftover tissue samples to for-profit companies that bank and distribute these samples, some for thousands of dollars apiece.
The story of Henrietta Lacks (and the current state of informed consent in the US) became a national bestseller in 2010 with the publication of Rebecca Skloot’s book The Immortal Life of Henrietta Lacks. This book has become required reading for countless high school, college, and graduate courses—and a very large number of entire high schools and colleges as well, through its use as a “Community Read” book. I assigned this book as part of the course I just finished teaching this term at the UMass Boston Honors College, which I entitled “Learning Biology through Reading Fiction and Non-fiction.” You can read about the other two books I assigned (The Story Within and Arrowsmith) in the September and October issues of STEM Pals.
I chose to include this book in my course for several reasons. First, I feel that it is important as a biologist to honor Henrietta’s seemingly endless contributions to science by introducing people to her story. Experiments on her cells were pivotal in developing vaccines and/or treatments for numerous diseases including polio, HIV, HPV, and tuberculosis. Indeed, Henrietta revolutionized biology, without ever knowing.
Second, the book is an excellent conduit for teaching about many important biology topics, such as the aforementioned diseases. The book is a particularly effective tool for teaching about cancer, as HeLa cells were taken from the cervical cancer that took Henrietta’s life. The book brings an intensely human perspective to the process of being diagnosed with cancer, having a cancer that metastasizes throughout the body, and undergoing treatments such as chemotherapy and radiation.
Third, the book provides an excellent summary of the current state of informed consent, and also the unfortunate history of human experimentation in the US that led to the establishment of informed consent regulations. The book raises awareness about the syphilis experiments in Tuskegee, the decades of forced sterilizations that came to be known as the “Mississippi Appendectomies,” and various rounds of experimentation on soldiers, prison inmates, and the mentally ill throughout the 20th century.
Fourth, the book reads more like a novel than any other non-fiction book I’ve read. The discussion of all of the above biological and ethical issues is interwoven with tales of murder, giant storms, soul cleansings, con men, asylums, slavery, and many other unbelievable-but-true events in the lives of Henrietta and her family.
If you are intrigued by the story, but don’t have the time to incorporate a book into your course, don’t despair. A good chunk of the story can be gleamed from the two excerpts from the book below, available on Rebecca Skloot’s website. I also find the Afterword of the book to be a virtually stand-alone chapter that is invaluable to understanding the issues at hand. I gathered ~25 short scenarios surrounding the ethics of informed consent, mainly from the Afterword, which is rich in examples both tied to and independent from Henrietta’s situation. Each of my students gave an 8-minute oral presentation on one of these scenarios, as their final project for this unit of the course.
If you are interested in learning more about Henrietta’s story, and sharing it with your students, here are some links to get you started:
If you would like to chat more about any of the readings, in-class activities, or assignments I used in my course this term, feel free to contact me at <rokop@alum.mit.edu>.
Megan Rokop is the Associate Director of the Honors College at UMass Boston, where she is a biology faculty member. She is trained as a microbial geneticist.
Back to newsletter |
