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Bantam Doubleday Dell Publishers, 1998
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Review
Six years ago, at the beginning of a second marriage for both my new wife and me, we found ourselves facing a genetic dilemma. We decided to have a baby, despite our advanced "reproductive" years - I was 43; my wife, 39.
I had two children from my previous marriage and she had one from hers, so we felt like we knew what we were doing. We also knew that, at our age, the chances of our baby having Down's syndrome, spina bifida, or some other genetic problem were much higher than when we'd had our other children. So we didn't object when the doctor encouraged us to have an AFP (alpha-fetoprotein) blood test to screen for problems.
The protein was elevated in my wife's blood. What had been a 1 in 100 chance of a serious problem suddenly dropped to 1 in 3. Amniocentesis, with its 1 in 200 chance of ending a pregnancy, was done. And then came the nearly intolerable two-week wait for the results. One-in-three. Would we go ahead and have a child with Down's syndrome? Could we handle it? What about our other children? Was that a rationalization? Would we have an abortion? Could we live with that? We spent many hard hours struggling with these questions. It was the worst two weeks either of us had ever endured. It ended happily, with a "normal" result and, months later, a "normal" blue-eyed, blond-haired boy.
We've never forgotten those two weeks.
So when Lois Wingerson writes in her latest book, Unnatural Selection, about a woman in a similar situation, it rings very true. The woman, Anna, only 29, is encouraged to take a series of genetic tests as part of her routine prenatal care, and the stress that results is relentless. She doesn't risk amniocentesis and, as a result, spends the rest of her pregnancy worried about her baby. "Anna had difficulty thinking of the baby who would soon emerge as hers, or as real, or as an individual of any kind," Wingerson writes.
In our case, given my wife's age, the tests were probably a good idea. And we were being offered a choice - abortion. But there was no real discussion, no serious counseling.
For Anna, the genetic testing happened not because it was needed, but because it was possible - and that goes to the core of Wingerson's book: "Prenatal testing deserves our attention here not so much in its own right but as an archetype, because it is in this setting that genetics has already permeated society, almost unremarked. One who is not pregnant, not a mother, not a feminist, even someone who loathes children, would do well to consider the case of prenatal testing, because it has all the hallmarks of the ingenuous acceptance of genetic technology that our own society wishes upon us."
Wingerson, the editor in chief of HMS Beagle, has written a book in the classic journalistic style of a professional science writer. It is well organized, filled with information, moves at a brisk pace, and is clearly written. She also tells stories about people throughout the text; an approach that keeps the more complex genetics discussions closely tied to the real world.
The first chapter of Unnatural Selection is perhaps the best written, as Wingerson opens with the tale of Rabbi Josef Ekstein's frustrating efforts to eradicate Tay-Sachs disease from the Orthodox Jewish community in Brooklyn. Wingerson writes of science and culture in a conversational style that pulls readers easily through Ekstein's tribulations, all while explaining the genetics of Tay-Sachs.
Good science writers blend the science into the overall story in a way that is unintrusive, yet still accurate and detailed. Wingerson does this well. You don't feel as though you are being forced to learn a degree's worth of genetics as you move through the stories, but the science is never far from the immediate focus.
She also uses the excellent technique of breaking many of the detailed scientific explanations out of the main text and putting them into separate boxes. In the midst of Rabbi Ekstein's attack on Tay-Sachs disease, you can stop and read a discussion about the related Gaucher's disease. As you read about Anna's travails with genetic screening, you can pause and read a separate discussion about how genetic counselors approach the problem of risk: "They're like gamblers who focus on extreme ends of the scale - winning big or losing everything. . . ."
Wingerson is interested, fundamentally, in forcing the reader to think about some very complex ethical questions that go to the very nature of what it is to be human. She emphasizes that the genetic future that many people worry about is very rapidly becoming the present. She traces the history of moral debate by taking the reader to specific moments - a key conference on the value of genetic testing, scientists meeting to find common language regarding human embryo events, researchers running a test program to find kids with fragile X syndrome.
By using events as the spine of her story, Wingerson brings you along slowly in what is ultimately a very complex debate. There is a pause to discuss the history of eugenics, where the past is nicely tied into the present. "It was eugenics," she writes, "that transformed birth control from a movement of social disruption to a respectable social cause." Wingerson notes that the mission statement of the American Birth Control League, which feminist icon Margaret Sanger founded in 1921, "lamented that 'those least fit to carry on the race are increasing more rapidly' and that 'funds that should be used to raise the standard of our civilization are diverted to the maintenance of those who should never have been born.'"
Wingerson continues through to the present, looking at the evolution of the Human Genome Organization, and in particular at the lack of real effectiveness of its watchdog panel, known as ELSI (for Ethical, Legal, and Social Implications). "That watchdog was no pit bull," Wingerson writes of ELSI. "It was more of a golden retriever: quite beautiful, good company, not known to be fierce, barks but doesn't bite."
She brings the discussion about who owns genetic information and what should be done with it into the present, where managed care and insurance companies become serious - and arguably dangerous - players in the genetics game.
In a field where there is a lot of gray and very little black and white, Wingerson leaves us with this: "The problem with gene research is the same as its beauty. Its intellectual simplicity, its satisfying resolution of baffling medical puzzles with logical molecular explanations, creates the illusion that it will provide us with easy answers to larger human problems." It isn't clear where genetic research will take us, but Wingerson's book provides a good primer for those who want to try to follow along.
Jim Dawson covered cops, courts, education, politics, and most of the other standard newspaper beats before moving into science writing for the Minneapolis Star Tribune 10 years ago.
The Sanger Centre - a genetic research center established by the Wellcome Trust and the British Medical Research Council. The site provides a wide range of scientific and general information about genetics.
U.S. Department of Energy Human Genome Program - contains just about everything you could want to know about genetic research. It has news releases, historical documents, a primer on molecular genetics, meeting calendars, and links to many other sites.
Where Science and Religion Meet - profile of Francis S. Collins, head of the U.S. Human Genome Project. From the February 1998 issue of Scientific American.
UK Government Commission Reports on Genetics and Life Insurance - in 1997, the British Human Genetic Advisory Commission created a subcommittee to "investigate the possible injustices which might occur if life insurance companies demanded from their clients a full disclosure of genetic information." This article about the study, with a link to the study itself, is maintained by the Southern Cross Bioethics Institute.
Genetics Resources - contains a remarkable listing of biological organizations, biological journals, searchable publications databases, as well as genome sequence databases. Maintained by the Department of Molecular Genetics, Chicago College of Medicine, University of Illinois.
You may purchase Unnatural Selection: The Promise and the Power of Human Gene Research (416 pp., hardcover) directly from:
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