- Email: [email protected]
Henrietta Lacks' story
Perspectives
scans reveal scores of different bits of chromosome as possible culprits—but together they explain just one part in 20 of the overall inherited liability to the disease. At that rate, several hundred different genes may be behind this illness, which means that their individual value as predictors of risk is, for most people, tiny. The chance of being born with a predisposition to a common illness is a gamble with huge numbers of cards. The unlucky lose life’s poker game in complicated and unpredictable ways. So many small cards can be shuffled that everyone fails in their own fashion. Plenty of other problems remain to be sorted out. Changes in gene
expression, rather than gene structure, may be important in disease. Pharmacogenomics (with the exception of inborn susceptibilities to certain drugs such as warfarin) has not lived up to early hopes and gene therapy has, until very recently, been pretty much a bust. Even so, The Language of Life is an engaging account of the very latest in medical genomics, written by one of the greatest experts on the subject and, as Collins says, the field is full of promise. But what about those voles? The cold eye of the paternity tester has fallen upon the private life of the prairies. DNA fingerprinting shows
that beneath the animal’s upright social habits as seen in the laboratory lies a dark universe of sexual mischief. In the wild, one in five offspring of each prairie vole pair is fathered by a male other than the marital partner, and around a quarter of all males and females have sex outside the household. Like many of my fellowcountrymen (but perhaps fewer Americans) the creatures are socially faithful but sexually fickle; happy to cheat but quick to forgive. The double helix still has not told us, voles or men, all its secrets.
Steve Jones [email protected]
In brief Book Henrietta Lacks’ story
The Immortal Life of Henrietta Lacks Rebecca Skloot. Crown Publishing Group/Random House, 2010. Pp 384. US$26·99. ISBN 1-400-05217-3. http://rebeccaskloot.com/theimmortal-life Watch a video at http:// rebeccaskloot.com/book-specialfeatures/audiovideo/
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Before a young African–American woman named Henrietta Lacks died from aggressive cervical cancer at Johns Hopkins Hospital, in 1951, clinicians excised a slice of her cervical tissue and Dr George Gey painstakingly cultured and incubated the prodigiously fecund cancer cells within. The immortal cell line Gey produced—dubbed HeLa—liberated the study of human cells from the messy business of human experimentation and helped in the development of the polio vaccine, drugs for leukaemia, influenza, haemophilia, and Parkinson’s disease, as well as advancing knowledge of cancer and genetics. But Rebecca Skloot’s graceful new book, The Immortal Life of Henrietta Lacks, is no romantic celebration of the medical revolution HeLa cells unleashed. It’s a richly observed portrait of Lacks and her descendants, the conflict between scientific culture and that of impoverished, rural African– Americans, and the potent dangers of ethical violations in medical research.
Johns Hopkins Hospital provided Lacks with the standard of care for her cancer—gratis—and according to Skloot, obtained consent from her husband before extracting further tissue samples from her corpse. But, in 1971, without the knowledge or consent of her family, Johns Hopkins researchers undermined Lacks’ anonymity by publishing her name; and sometime before 1985 released her medical records to the press. Unlike the transgressions of the US Public Health Service’s notorious syphilis study in Tuskegee, Alabama, details of which first splashed across front pages in 1972, violating Lacks’ privacy did not seem to physically harm Henrietta or her family. Yet the damage was devastating. Just a handful of generations removed from slavery, the Lacks family had struggled through their motherless life in Baltimore. Abandoned by their father, Henrietta’s daughter Deborah is abused by a relative. Her enraged son Joe ends up in prison. Another daughter who has epilepsy is consigned to a state hospital in childhood and dies, unvisited,
aged 15 years. For researchers, HeLa cells were experimental workhorses, wonderfully easy to grow and transport. But for the Lacks family, those cells were the essence of their lost mother, whom scientists had infected with viruses, shot into space, crossed with mice, and generally condemned to everlasting torment. “That damn doctor”, rages Henrietta’s son in this book, “done raped her cells”. Underinsured and saddled with prescriptions they could not afford to fill, Henrietta’s descendants feel they have reaped few benefits from the medical revolution their mother’s tissues allowed. Skloot takes no shortcuts, probing the ethical implications of her own pursuit of the scarred Lacks family, as well as the darker side of the Lacks themselves. I can’t think of a better way to capture the corrosive effects of ethical transgressions in medical research. It’s a heartbreaking story, beautifully rendered.
Sonia Shah [email protected]
www.thelancet.com Vol 375 April 3, 2010
scans reveal scores of different bits of chromosome as possible culprits—but together they explain just one part in 20 of the overall inherited liability to the disease. At that rate, several hundred different genes may be behind this illness, which means that their individual value as predictors of risk is, for most people, tiny. The chance of being born with a predisposition to a common illness is a gamble with huge numbers of cards. The unlucky lose life’s poker game in complicated and unpredictable ways. So many small cards can be shuffled that everyone fails in their own fashion. Plenty of other problems remain to be sorted out. Changes in gene
expression, rather than gene structure, may be important in disease. Pharmacogenomics (with the exception of inborn susceptibilities to certain drugs such as warfarin) has not lived up to early hopes and gene therapy has, until very recently, been pretty much a bust. Even so, The Language of Life is an engaging account of the very latest in medical genomics, written by one of the greatest experts on the subject and, as Collins says, the field is full of promise. But what about those voles? The cold eye of the paternity tester has fallen upon the private life of the prairies. DNA fingerprinting shows
that beneath the animal’s upright social habits as seen in the laboratory lies a dark universe of sexual mischief. In the wild, one in five offspring of each prairie vole pair is fathered by a male other than the marital partner, and around a quarter of all males and females have sex outside the household. Like many of my fellowcountrymen (but perhaps fewer Americans) the creatures are socially faithful but sexually fickle; happy to cheat but quick to forgive. The double helix still has not told us, voles or men, all its secrets.
Steve Jones [email protected]
In brief Book Henrietta Lacks’ story
The Immortal Life of Henrietta Lacks Rebecca Skloot. Crown Publishing Group/Random House, 2010. Pp 384. US$26·99. ISBN 1-400-05217-3. http://rebeccaskloot.com/theimmortal-life Watch a video at http:// rebeccaskloot.com/book-specialfeatures/audiovideo/
1154
Before a young African–American woman named Henrietta Lacks died from aggressive cervical cancer at Johns Hopkins Hospital, in 1951, clinicians excised a slice of her cervical tissue and Dr George Gey painstakingly cultured and incubated the prodigiously fecund cancer cells within. The immortal cell line Gey produced—dubbed HeLa—liberated the study of human cells from the messy business of human experimentation and helped in the development of the polio vaccine, drugs for leukaemia, influenza, haemophilia, and Parkinson’s disease, as well as advancing knowledge of cancer and genetics. But Rebecca Skloot’s graceful new book, The Immortal Life of Henrietta Lacks, is no romantic celebration of the medical revolution HeLa cells unleashed. It’s a richly observed portrait of Lacks and her descendants, the conflict between scientific culture and that of impoverished, rural African– Americans, and the potent dangers of ethical violations in medical research.
Johns Hopkins Hospital provided Lacks with the standard of care for her cancer—gratis—and according to Skloot, obtained consent from her husband before extracting further tissue samples from her corpse. But, in 1971, without the knowledge or consent of her family, Johns Hopkins researchers undermined Lacks’ anonymity by publishing her name; and sometime before 1985 released her medical records to the press. Unlike the transgressions of the US Public Health Service’s notorious syphilis study in Tuskegee, Alabama, details of which first splashed across front pages in 1972, violating Lacks’ privacy did not seem to physically harm Henrietta or her family. Yet the damage was devastating. Just a handful of generations removed from slavery, the Lacks family had struggled through their motherless life in Baltimore. Abandoned by their father, Henrietta’s daughter Deborah is abused by a relative. Her enraged son Joe ends up in prison. Another daughter who has epilepsy is consigned to a state hospital in childhood and dies, unvisited,
aged 15 years. For researchers, HeLa cells were experimental workhorses, wonderfully easy to grow and transport. But for the Lacks family, those cells were the essence of their lost mother, whom scientists had infected with viruses, shot into space, crossed with mice, and generally condemned to everlasting torment. “That damn doctor”, rages Henrietta’s son in this book, “done raped her cells”. Underinsured and saddled with prescriptions they could not afford to fill, Henrietta’s descendants feel they have reaped few benefits from the medical revolution their mother’s tissues allowed. Skloot takes no shortcuts, probing the ethical implications of her own pursuit of the scarred Lacks family, as well as the darker side of the Lacks themselves. I can’t think of a better way to capture the corrosive effects of ethical transgressions in medical research. It’s a heartbreaking story, beautifully rendered.
Sonia Shah [email protected]
www.thelancet.com Vol 375 April 3, 2010