The Immortal Life of Henrietta Lacks

reviewed by Deborah Bowles

The Immortal Life of Henrietta Lacks, by science journalist Rebecca Skloot, is the amazing story of the origin of the HeLa cell, the world’s first immortal human cell. Weaving together biography, science, and the ethics of biomedical research, Skloot brings to life the African American woman whose visit to a hospital connected her, without her knowledge, to the most significant medical advances of the twentieth century.

Henrietta Lacks grew up on a Virginia tobacco farm and later migrated to Baltimore with her husband and five children. In 1951, when she was thirty, Lacks went to Johns Hopkins Hospital for what she called a knot in her womb. The knot was an aggressive cervical cancer, and she was soon hospitalized with no hope for recovery. The public wards of Johns Hopkins were filled with patients like Lacks, mostly black and unable to pay their medical bills. Perceived as powerless by doctors, these patients were often kept uninformed of treatments and procedures they received while hospitalized. It was also normal practice, and remains so today, for doctors to collect cells and tissue samples without patient consent. Before Lacks died, doctors removed samples of her cancerous tissue without her consent and without informing her family.

Lacks’s cells were astoundingly resilient—they not only lived outside of her body, but thrived and reproduced like no other human cells. Lacks’s cells, named HeLa after the first letters in her names, replicated themselves indefinitely in the lab and soon became a medical marvel. HeLa cells were initially given away to any doctor or lab that requested them, but they were eventually commercialized, resulting in millions of dollars of profits. HeLa cells have been used in vast amounts of medical research and were involved in creating the polio vaccine, chemotherapy drugs, and AIDS treatments. Shockingly, Lacks’s family knew nothing about the cells’ existence and their impact on modern medicine until Skloot contacted them while writing this book.

Skloot’s dedication to sharing Lacks’s story with the world is evident on every page. She first learned of the HeLa cell in a biology class and was intrigued by the mysterious female donor. She spent over a decade researching Lacks’s life and family and the trajectory of her cells. Lacks’s family—plagued by poverty and health problems—initially reacted to learning about HeLa with suspicion and anger. Rumors of poor African Americans kidnapped for research purposes and treated like guinea pigs at Johns Hopkins circulated throughout Baltimore for decades, and learning about HeLa confirmed their worst nightmares. As she conducted her research, Skloot worked, with sincerity and patience, to help them understand and appreciate Lacks’s contribution to medicine, but she didn’t try to convince them that it was right that no one informed them of HeLa’s immortal existence.

The Immortal Life of Henrietta Lacks is a fascinating book that gives due honor to the woman herself while raising many questions about the ethics of medical research. It remains normal practice for doctors to take cells and tissue samples without patient consent. Should doctors have that right? Should we be comfortable not knowing if or how our cells are used once they are taken from our bodies?  Is it ethical for hospitals to profit from selling a patient’s cells and not share those profits with the patient or the family? And if medical advances are only possible by keeping patients uninformed, are these questions still worth asking?

Deborah Bowles is a National Training Instructor for the Great Books Foundation. She has an MA in secondary education and a BS in business administration. She lives outside of Washington, D.C., and enjoys spending her free time reading and researching history.

The Humanities and Democracy

by Mike Wolfkiel

In Not for Profit: Why Democracy Needs the Humanities (Princeton University Press, 2010), Martha Nussbaum, professor of law and ethics at University of Chicago, attempts to provide a manifesto for American education. She is very concerned about the shrinking of the humanities curriculum. It is not just that students flock to schools of business, engineering, and preprofessional programs—programs concerned primarily with career and profit—but that these programs are increasingly driven by a sense that profit is all and that the humanities have little to offer.
Her argument is elegant and even at times profound. The awareness that other people are like us, with needs, struggles, and a history, is an achievement that calls for continual nourishment from the time it is developed in infancy. The best nourishment, she argues, is a strong foundation in the humanities. Democracy demands that voters be able to weigh the good of all its citizens. It depends on this grasp of a shared humanity along with an ability to think critically.

Reading Nussbaum’s book, I was continually reminded of the audacity of the American experiment in democracy. The noble ideals make it easy to forget that the democracies of ancient Greece and Rome were primarily affairs of wealthy, empowered males. The ars liberalis (rhetoric, grammar, and logic) were concerns of those who already were free, not those who could only aspire to freedom—which included most of the people in society. American democracy also has its roots in such elitism. One of its great triumphs, however, is that so far it has been characterized by a steady expansion of rights. The nineteenth and twentieth centuries were dominated by wars, arguments, and social upheaval connected with extending rights and protections to marginalized groups of different kinds—slaves, women. Today, the status of illegal immigrants and the rights of those with differing sexual orientations are under debate.

Do we live in a time when American democracy turns its back on its ideals? While I doubt the humanities, by themselves, have the power to convert the forces of narcissism, especially when rooted in deep economic anxiety, into care and respect for others, I have to applaud Nussbaum for pointing out the threat to our democracy posed by an educational system that doesn’t value the humanities. Even if care for others won’t move us, perhaps the desire to avoid the fates of Greece and Rome will.

Mike Wolfkiel  is a Senior Training Instructor for the Great Books Foundation. He has an M.A. in philosophy and a B.A. in philosophy and religious studies from Marquette University. And to the delight of his crabgrass and the dismay of his tennis game, he spends his spare minutes trying to write fiction.

The views expressed in the posts and comments on this blog are the authors' personal opinions and do not represent the views of the Great Books Foundation.

The Game of Shared Inquiry Discussion

I recently participated in a discussion of David Perkins's Making Learning Whole: How Seven Principles of Teaching Can Transform Education (2010). Perkins thinks about learning as a type of game in which players are engaged in thoughtful concentration over a period of time, in episodes, and in varying contexts. Perkins's favorite game metaphor is baseball. From it he derives his first principal: both experienced and inexperienced players can play something like the "whole" official game. Novice and young players have junior versions with shorter base paths and fewer innings, sometimes hitting balls off of tees rather than a skilled pitcher. Having a version of the whole game that even a novice can play is key to Perkins's other six game-related principals (make the game worth playing, work on the hard parts, play out of town, uncover the hidden game, learn from the team and other teams, and learn the game of learning). Perkins argues that teachers can create junior versions of complex skills such as reading to increase student engagement and success.

I work for the Great Books Foundation, and the whole game is reading high-quality literature and engaging in Shared Inquiry^TM discussion. The full version of the game is reading and understanding challenging texts and discussing them thoroughly. But we offer even beginning readers a version of the game that retains the essential elements of the whole game and uses texts that are more appealing and easier to read for the young or novice reader. At all levels, though, we suggest "rules of the game" that limit grandstanding and provide a field of play that has boundaries--keeping the discussion within the boundaries of a text, for example.

In the game of Shared Inquiry, a focus question is posed by a discussion leader. The question is intriguing and has more than one good answer. Each reader gets a chance to speak. Each response must stay "in bounds," and others can agree or disagree with that response--while also staying in bounds. In this game, readers get to hear other viewpoints, strategies, and arguments, and can hone their own skills. There is much rereading because answers to questions must be found somewhere in the text. It's a very rich game, and the novice version looks a lot like the whole version.

Discussing Making Learning Whole with a group of diverse teachers helped give me renewed confidence that Shared Inquiry stands up to general principles of learning.

Mark Gillingham is vice president of technology at the the Great Books Foundation. He works to develop ways to use technology, information, and research to forward the mission of the Foundation.