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Reading groups: Her death gave life to others

by
29 May 2012

Robin Gill on The Immortal Life of Henrietta Lacks by Rebecca Skloot

THIS is a fascinating and unusual book, now that we are moving from Easter to Trinity Sunday. It is not ex­actly about resurrection, but it is engaging, and raises many important ethical questions.

The Immortal Life of Henrietta Lacks is written by the American journalist and science broadcaster Rebecca Skloot. It is an easy read, well-paced, and has short chapters that usually end with a cliff-hanger. It is depicted as “The New York Times bestseller”, and reads like a novel. Yet the author insists at the outset that it is not:

This is a work of non-fiction. No names have been changed, no characters invented, no events fabricated. While writing this book, I conducted more than a thou­sand hours of interviews with family and friends of Henrietta Lacks, as well as with lawyers, ethicists, scientists, and journalists who’ve written about the Lacks family. I also relied on extensive archival photos and documents, scientific and his­torical research and the personal journals of Henrietta’s daughter, Deborah Lacks.

This is a work of non-fiction. No names have been changed, no characters invented, no events fabricated. While writing this book, I conducted more than a thou­sand hours of interviews with family and friends of Henrietta Lacks, as well as with lawyers, ethicists, scientists, and journalists who’ve written about the Lacks family. I also relied on extensive archival photos and documents, scientific and his­torical research and the personal journals of Henrietta’s daughter, Deborah Lacks.

But who was Henrietta Lacks, and why is it worth having a whole book about her and her family? Before read­ing it, I had no idea, despite having worked in medical ethics for the past two decades. Many readers may be equally baffled, especially when they discover that she was an impoverished, poorly educated, and untravelled African-American mother, who died from an aggressive form of cervical cancer in 1951, at the age of just 31.

What emerges is that the cancer cells taken from her tumour shortly before she died enabled one of the most important developments in modern medical science — the pro­duction of an immortal cell-line. These cancerous cells were so viru­lent that they enabled scientists around the world to multiply them many millions of times over, and then use them to test life-saving medicines and vaccines (such as that for polio). Known as the HeLa cells (after her initials), they are now standard in labs around the globe.

Ms Skloot tracks down some of the original scientists who made this medical breakthrough, as well as mem­bers of Henrietta Lacks’s troubled family. She finds a yawning gap between members of the family, who could not afford US medical in­surance, and a pharmaceutical industry that has made a fortune using HeLa cells.

She exposes the very minimal “consent” given by Henrietta Lacks for the removal of cells from her tumour (with no explanation about retention and research), and an al­most complete lack of information given to her family after her death. Impoverished African-Americans had good reason in the 1950s, as we know now, to fear that some medical scientists at the time were prepared to use them as unwitting medical guinea-pigs, even for life-threatening experiments.

I have been involved in the ethical assessment of stem-cell lines for the past decade. There is never any question of knowing the identity of donors. Names are always blanked out on consent forms that I am shown. My job is to ensure that con­sent has been properly obtained, and that the research involved has the potential to bring real benefit to those with serious disabilities. Track­ing down donor families is pre­cluded, but also seems obnoxious.

For all her skills and concerns, I squirmed at times about some of Ms Skloot’s investigative methods. Hen­rietta Lacks’s daughter Deborah did not remember her mother, and ap­peared to be plagued by anxiety and even misplaced guilt. Yet Ms Skloot pursued her relent­lessly, before finally gaining her confidence.

The poor woman had pre­viously been tracked by other journalists, and even by a confidence trickster who had been imprisoned several times. Her son was in jail, and one of her brothers was deeply dis­turbed. Perhaps she should simply have been left alone. She died shortly before this book was published. Who knows what surviving mem­bers of her family think of the book, with its record of their various misdemean­ours? They did not choose to be genetically connected to the famous HeLa cell line.

This lively book could well be used by parish study-groups to debate some vital ethical questions. Should we really be allowed to intrude into the lives of the powerless in this way? How did scientists in the recent past imagine that patient consent was a matter of such little concern? Should patients or their families be able to benefit financially from pharmaceutical pro­ducts derived from their tissue? Does the common good outweigh the scruples of individuals?

The poor woman had pre­viously been tracked by other journalists, and even by a confidence trickster who had been imprisoned several times. Her son was in jail, and one of her brothers was deeply dis­turbed. Perhaps she should simply have been left alone. She died shortly before this book was published. Who knows what surviving mem­bers of her family think of the book, with its record of their various misdemean­ours? They did not choose to be genetically connected to the famous HeLa cell line.

This lively book could well be used by parish study-groups to debate some vital ethical questions. Should we really be allowed to intrude into the lives of the powerless in this way? How did scientists in the recent past imagine that patient consent was a matter of such little concern? Should patients or their families be able to benefit financially from pharmaceutical pro­ducts derived from their tissue? Does the common good outweigh the scruples of individuals?

For me, this book is instructive at two different levels. In terms of medical ethics, it shows that the situation has changed for the better over the past six decades. Doctors and research scientists are now re­quired to obtain proper consent to retain and use human tissue, and will be in deep trouble if they do not.

But, in terms of the ethics of investigative journalism, there does seem to be considerable room for im­provement (as the Leveson in­quiry is demonstrating). Respect for people should surely be at the heart of both professions.

The Revd Dr Robin Gill is Professor of Applied Theology at the University of Kent.

The Immortal Life of Henrietta Lacks by Rebecca Skloot is published by Pan Macmillan at £7.99 (CT Bookshop £7.20); 978-0-330-53344-7.

Questions

How far could it be said, given the medical advances derived through research on HeLa cells, that the end has justified the means?

Questions

How far could it be said, given the medical advances derived through research on HeLa cells, that the end has justified the means?

Would the story have had a different slant if Hen­rietta had given permission for her cells to be used?

Would the story have had a different slant if Hen­rietta had given permission for her cells to be used?

What do you think about the morality of selling body parts? Are the Lacks family right to feel aggrieved that they have received no financial rewards from the use of HeLa cells?

What do you think about the morality of selling body parts? Are the Lacks family right to feel aggrieved that they have received no financial rewards from the use of HeLa cells?

How did Rebecca Skloot manage to move the family from hostility to friendship in her relationship with them? What was the key moment in the change?

How did Rebecca Skloot manage to move the family from hostility to friendship in her relationship with them? What was the key moment in the change?

Do you think a white family would have been treated any differently, given the time and place in which Henrietta’s cells were harvested?

Do you think a white family would have been treated any differently, given the time and place in which Henrietta’s cells were harvested?

How would the book have been different if Ms Skloot had omitted to write about her place in the story?

How would the book have been different if Ms Skloot had omitted to write about her place in the story?

What message, if any, do you think the author is trying to convey? How successful is she in doing this?

What message, if any, do you think the author is trying to convey? How successful is she in doing this?

How did Henrietta’s early death affect her children?

How did Henrietta’s early death affect her children?

Why was Henrietta’s name so easily forgotten?

Why was Henrietta’s name so easily forgotten?

What part does faith play in the story? What were Rebecca’s reactions to Gary’s prayers?

IN OUR next reading-groups page, on 6 July, we will print extra information about the next book. This is The Other Hand by Chris Cleave. It is published by Sceptre/Hodder at £8.99 (CT Bookshop £8.10); 978-0-340-96342-5).

What part does faith play in the story? What were Rebecca’s reactions to Gary’s prayers?

IN OUR next reading-groups page, on 6 July, we will print extra information about the next book. This is The Other Hand by Chris Cleave. It is published by Sceptre/Hodder at £8.99 (CT Bookshop £8.10); 978-0-340-96342-5).

Author notes

Author notes

Chris Cleave was born in 1973 in London, and spent some of his childhood living in West Africa. He graduated from Balliol College, Oxford, with a degree in psychology, before embarking on a series of jobs, including those of barman, long-distance sailor, teacher of marine navigation, and journalist. He lives now in London with his wife and three children.

Chris Cleave was born in 1973 in London, and spent some of his childhood living in West Africa. He graduated from Balliol College, Oxford, with a degree in psychology, before embarking on a series of jobs, including those of barman, long-distance sailor, teacher of marine navigation, and journalist. He lives now in London with his wife and three children.

His first book, Incendiary, won the 2006 Somerset Maugham award; The Other Hand was shortlisted for the 2008 Costa Novel Award. His latest novel, Gold, is to be published in the UK this month.

His first book, Incendiary, won the 2006 Somerset Maugham award; The Other Hand was shortlisted for the 2008 Costa Novel Award. His latest novel, Gold, is to be published in the UK this month.

Book notes

Book notes

The story in The Other Hand is told by two of its main characters: Little Bee and Sophie. Little Bee has fled from Nigeria, and has been in­advertently released from an Essex detention centre without any papers or support. Not knowing what else to do, she contacts Sophie, the editor of a women’s magazine, and her husband, Andrew, whom Bee had first met when they were on holiday in her home country. What the three of them experienced when they first met on a Nigerian beach had enormous ramifications, and Sarah and Bee have to live with the con­sequences.

The story in The Other Hand is told by two of its main characters: Little Bee and Sophie. Little Bee has fled from Nigeria, and has been in­advertently released from an Essex detention centre without any papers or support. Not knowing what else to do, she contacts Sophie, the editor of a women’s magazine, and her husband, Andrew, whom Bee had first met when they were on holiday in her home country. What the three of them experienced when they first met on a Nigerian beach had enormous ramifications, and Sarah and Bee have to live with the con­sequences.

Books for the next two months:

Books for the next two months:

August: Jubilate by Michael Arditti

August: Jubilate by Michael Arditti

September: Take This Bread by Sara Miles

September: Take This Bread by Sara Miles

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