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Anger and Forgiveness"Are You There Alone?"10 Good Questions about Life and DeathA Casebook of Ethical Challenges in NeuropsychologyA Companion to BioethicsA Companion to BioethicsA Companion to GenethicsA Companion to GenethicsA Companion to Muslim EthicsA Cooperative SpeciesA Critique of the Moral Defense of VegetarianismA Delicate BalanceA Fragile LifeA Life for a LifeA Life-Centered Approach to BioethicsA Matter of SecurityA Mirror Is for ReflectionA Natural History of Human MoralityA Philosophical DiseaseA Practical Guide to Clinical Ethics ConsultingA Question of TrustA Sentimentalist Theory of the MindA Short Stay in SwitzerlandA Tapestry of ValuesA Very Bad WizardA World Without ValuesAction and ResponsibilityAction Theory, Rationality and CompulsionActs of ConscienceAddiction and ResponsibilityAddiction NeuroethicsAdvance Directives in Mental HealthAfter HarmAftermathAgainst AutonomyAgainst BioethicsAgainst HealthAgainst MarriageAgainst Moral ResponsibilityAgency and 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How Much?Why Some Things Should Not Be for SaleWisdom, Intuition and EthicsWithout ConscienceWomen and Borderline Personality DisorderWomen and MadnessWondergenesWould You Kill the Fat Man?Wrestling with Behavioral GeneticsWriting About PatientsYou Must Be DreamingYour Genetic DestinyYour Inner FishYouth Offending and Youth Justice Yuck!
Cell biology made a huge advance when it gained the ability to reproduce human cells in the laboratory at will, creating effectively an unending supply. It meant that biologists were able to explore the effects of a huge variety of conditions on human cells, and so it was enormously important for medicine. It had been a long held goal to achieve this, but it proved difficult. Eventually in 1951, at Johns Hopkins University in Baltimore, a researcher took the cells from a cancer tumor on a woman's cervix, and succeeded in getting those cells to replenish themselves. Soon, this supply of cells was being used by researchers all over the world: the cells were named HeLa. They have been used in thousands upon thousands
Most researchers did not k now where the cells came from, and did not give the question much thought. But Rebecca Skloot was inquisitive about the person from whom the cells were taken from the first times she heard about them when she was a teenager. Eventually she embarked on a project to find out about the woman. There had been various stories about her in the press over the years, but the information in them was not consistent and there was little about the woman herself. Skloot's project to find out about Henrietta Lacks took over ten years to complete while she did the research and also worked as a science journalist. She contacted the Lacks family and found that they were extremely suspicious and even hostile towards her. She eventually figured out that they had had many experiences of other white journalists asking them questions, and they had grown tired of it. Their suspicion also came from the fact that they were a poor black family with many problems including many serious illnesses, and talking to interviewers about the HeLa cells just reminded them that this tremendously important medical discovery had not helped them at all. It took a great deal of effort for Skloot to build up trust with the family, but she did it.
The central relationship of the book is between Skloot and Deborah Lacks, Henrietta's daughter. Skloot describes her efforts to get Deborah to talk to her, which required getting other members of the family to agree, which was no simple matter. There was a basic gap in culture between Skloot and the Lacks family: she was highly educated, white and agnostic, while they were poorly educated, black, and very religious. The immortality of Henrietta's cells had a very different significance for them than it did for Skloot. In her meetings with them, she makes efforts to explain more science to them, but the warmth between herself and Deborah is built on more than the science. Part of the basis of their friendship was the ethics of the story.
Henrietta never gave informed consent for her cells to be used in medical research, and certainly not for them to be used in profit making ventures. Medical business now makes millions from research on the HeLa cells, but permission has never been given for this. This is the heart of Skloot's book: the use of poor black people in medical research. Henrietta was not harmed by the research done on her cells, but nevertheless, Skloot successfully draws connections between her story and that of the Tuskegee syphilis study, where a study done on black men never fully informed them of the dangers to them. Skloot broadens the issue by also bringing in other cases of experiments done on African-American people who were living in poverty and who could hardly have understood what was being asked of them, because their medical knowledge was so lacking. But given such a history, it is no surprise that there is now a significant degree of suspicion about medical practice in the African-American community. The story is at its most moving when Skloot goes with Deborah Lacks to investigate what happened to her sister who was put in a psychiatric institute for because of her mental problems, and they discover that the doctors there conducted painful medical experiments on her without ever seeking her consent or that of her family.
So Skloot's book is about race, class, poverty, science and ethics. She gives considerable detail about the troubles of the Lacks family, which includes not only illness, but also unhappy relationships, crime and imprisonment. We get a picture not only of science, but also modern America. It is likely to provoke strong reactions in readers. These are bound to include shock at the arrogance of medical researchers who paid no attention to their patients' rights, but may also include surprise and frustration at the way that the Lacks family members seem to have a great deal of difficulty helping themselves. Skloot's tone is remarkably even-tempered, and one can't help imagining that she must have experienced moments of extreme frustration and even impatience. In subsequent interviews done since the publication of the book (one of which is at the end of the unabridged audiobook) she is eloquent in showing the family's point of view. Yet as she tells her story of her friendship with Deborah Lacks in the book, one marvels at her patience, and one wonders whether she is giving a completely full account of her own reactions. She only once loses her cool, after a very difficult few days she spent with Deborah, although she hints that there were many other less extreme instances of similarly challenging behavior.
Skloot is in a difficult position given that she had to win the trust of the family in order to get them to talk to her, since she cannot then betray that trust. But that may compromise her journalistic objectivity. This raises the question of what is her role as writer: is this a piece of science and ethics reporting or is it more a memoir of her experience and discoveries? She has discussed in some places her struggle about how much to include herself in the book, and she has good reason to be worried about this. Is this about her or Henrietta? Is she an advocate for the family? To what extent can she be dispassionate about them, and has she indeed given her readers the whole truth about them? These questions feel unresolved by the end of the book.
The Immortal Life of Henrietta Lacks would be a fine book to use in an undergraduate medical ethics course, and the hardcopy version contains a very helpful set of notes with references to related material (although this is not available in the unabridged audiobook). It raises essential issues of the balance between medical progress and the rights of human subjects in research, providing a strong historical and personal context to the story of the HeLa cells. Yet at the same time, medical ethics researchers may be hesitant in using the book in their research because of the uncertainty as to Skloot's role as a scholar. This is not to suggest there are any false or even misleading statements in the book, but there are normally clear differences between memoirs, books by activists and books by academic scholars. Skloot's approach is a mixture of all these, and this fact needs to be attended to in scholarly uses of the book.
The unabridged audiobook is performed by Cassandra Campbell with Bahni Turpin performing the African-American speakers, whose words are reproduced in the text without conversion to standard English. It's a powerful reading.
· Rebecca Skloot
· WNYC Radiolab Show on Henrietta's Tumor
© 2010 Christian Perring
Christian Perring, Professor of Philosophy, Dowling College, New York