Unnatural Selection: The Promise and the Power of Human Gene Research - Hardcover

Wingerson, Lois

Hardcover

ISBN 10: 0553097091 ISBN 13: 9780553097092

Publisher: Bantam, 1998

Synopsis

In this timely, provocative new book, Lois Wingerson explores advances in human genetic research--and how these advances are redefining the way we view ourselves and our world.

Every week brings word of new genetic findings. It no longer startles us to read that a gene has been identified that predisposes an individual to breast cancer, to colon cancer, to Alzheimer's disease. From physical illnesses to behavioral traits, the mapping of our genes is moving with astonishing rapidity. Soon we will have extraordinary amounts of information about our most intimate selves. But--as this insightful, sometimes disturbing book makes clear--this new knowledge raises serious ethical, legal, and personal questions none of us can afford to ignore.

On the heels of each new finding comes the capacity to test for the disorder the gene may activate, then the test itself--and then the questions. Just because the test is available, should we have it?  The tests are often marketed by for-profit companies. Who is to determine what conditions warrant testing? Should it be up to the individual? A group of experts? A government agency? If a person learns he or she carries the gene for a particular disorder, what then? And, in the age of medical claim forms and computer networks, who else has access to that information? What if an employer finds out? If an insurance carrier denies future coverage? What about conceiving a child? Subjecting the fetus to prenatal genetic testing? If treatments for the condition lie well in the future, what benefit is it to know you or your child carry that gene?

As the latest genetic breakthroughs make their way from the scientists' laboratories into individuals' lives, we will all face questions like these. In clear and accessible language, Unnatural Selection takes us into the world of the researchers, physicians, ethicists, families, and people like ourselves as they contemplate the promise and consider the pitfalls of this exploding field of knowledge.

About this title

About the Author

Lois Wingerson is editor in chief of HMS Beagle, an Internet magazine for biomedical scientists, published by Elsevier Science, and the author of Mapping Our Genes (1990). She has written for The Economist, Science Digest, New Scientist, Discover, and other prestigious lay and professional scientific publications. She lives in Brooklyn, New York.

From the Inside Flap

ly, provocative new book, Lois Wingerson explores advances in human genetic research--and how these advances are redefining the way we view ourselves and our world.

Every week brings word of new genetic findings. It no longer startles us to read that a gene has been identified that predisposes an individual to breast cancer, to colon cancer, to Alzheimer's disease. From physical illnesses to behavioral traits, the mapping of our genes is moving with astonishing rapidity. Soon we will have extraordinary amounts of information about our most intimate selves. But--as this insightful, sometimes disturbing book makes clear--this new knowledge raises serious ethical, legal, and personal questions none of us can afford to ignore.

On the heels of each new finding comes the capacity to test for the disorder the gene may activate, then the test itself--and then the questions. Just because the test is available, should we have it? The tests are often marketed by for-profit co

Reviews

Approaching her subject with a journalist's objective eye, Wingerson (Mapping Our Genes) takes a comprehensive look at the issues swirling around the rapidly developing field of human genetics. She is at her best early on, discussing the personal decisions faced by couples who discover that their fetuses are likely to be born with Tay-Sachs, cystic fibrosis or any of a growing number of diseases for which prenatal genetic testing has become available. Equally moving is her account of the dilemmas faced by genetic counselors in their attempts to be caring and informative while remaining nondirective. Less successful is the book's middle section, which provides a brief history of the early eugenics movement and a discussion of the genetic effects of nuclear radiation. Wrapping up, Wingerson returns to the issues raised in her early chapters, though now focusing on social and ethical rather than personal considerations. Possible abuses of genetic information acquired by employers and insurers are covered in detail, as are the ramifications, potentially positive and negative, of the Human Genome Project. Wingerson, perhaps taking her lead from genetic counselors, raises provocative philosophical, moral and political questions but provides few answers, or even personal opinions. Throughout, numerous short, boxed features furnish background material that enables even readers with minimal scientific knowledge to gain a solid grasp of the complex issues broached. Agents, Cindy Klein and Georges Borchardt.
Copyright 1998 Reed Business Information, Inc.

Wingerson examines genetic testing, especially in pregnancy, geneticists' work in Germany and the U.S. (concentrating on the Human Genome Project), and how genetic research may affect human ethnic diversity. Finally, she discusses the implications of genetic research for the future. She does all this readably, thanks to her use of extended case histories and frequent accounts of the meetings of scientists and policy activists. She explains much current and recent research, imparting a good contemporary picture of a fast-developing field, and educes many intriguing facts, such as that Tay-Sachs disease is now more common in the U.S. among non-Jews than Jews. Her summaries of government reports and of various syndromes are quite useful, and her definitions of technical terms add further value. She is especially good on the assessment of genetic risks, the importance of informed and understandable counseling, and the personal decision to have or not to have genetic tests performed. To the literature of a subject already extensively covered, Wingerson makes a positive, popular addition. William Beatty

This volume representes an even-handed look from a journalist at the potential benefits and problems associated with the mapping of the human genome. Inspiring stories of the successful control of genetic diseases are contrasted with prophetic models of a prejudiced healthcare system in a world where an individual's cellular content is no longer a secret. Includes a brief list of genetic disease foundations and relevant Internet sites. (LJ 9/1/98)
Copyright 1999 Reed Business Information, Inc.

Excerpt. © Reprinted by permission. All rights reserved.

Choices

For his birthday, Daddy gave him a time bomb.
Britain's #1 killer can be hereditary.
Help us fight it.
--British Heart Foundation billboard


For some couples the news is real, it's bad, and it won't be gone by morning. Consider now Jonathan and Kris Vander Plaat. They are here because they have faced a genetic verdict--a final, unequivocal verdict--and carried on, and because they are willing to share the experience.

For one week in April 1993, while he drove back and forth every day between his home in Bergen County, New Jersey, and Columbia Presbyterian Medical Center in New York City to visit his baby, Jonathan Vander Plaat told himself there was still hope that it was all a terrible mistake. Everyone knows the feeling: I can cope with this. Yes, I can. Here is what comes now--one foot, and then the other.

Because of the temporary commute and his own state of mind, Jonathan completely missed the sad news back home. A different set of parents were burying an eighteen-year-old son, who had died the day before he was due to give the valedictory speech at his high school graduation.

The teenage boy died in the same hospital where Jonathan's infant daughter, Meghan, was now staying, of the same illness that kept her there: cystic fibrosis. Jonathan's own brothers were the undertakers who buried the young man that week. (The Vander Plaat family operates three funeral homes in Bergen County.) They certainly didn't involve Jonathan in that particular funeral.

He learned about it only several weeks later. The owner of a luncheonette near the Vander Plaat funeral home asked Jonathan how he had ever handled burying that high school kid, knowing he had cystic fibrosis just like little Meghan.

Afterward, Jonathan blew up at his father. "You had no right!" he said. "I'm going to have to deal with things like that!" Jonathan's daily labor involves embalming the dead and counseling their families. He knows well enough to keep an eye out for those families who seem to go on after a funeral as if nothing is wrong. He knows he has to try to find a way to help them get started on the hard work of grief. Secrecy and pretending are out of the question. Living in the dark is no strategy.

In addition to their regular duties, the Vander Plaats inter, free of charge, miscarried fetuses--small bodies who are mourned for who they might have been rather than for who they are. Asked how his profession has affected his attitude toward his little girl's illness, Jonathan responds without a pause.

"I guess I value each day more than I would if I were not a funeral director," he says, "and I value infants even more."

That doesn't mean he will ever coddle Meghan. Quite the contrary: just a month after her illness was diagnosed, when Jonathan and his wife Kris were certain at last that their three-month-old daughter had cystic fibrosis, they took her on a camping trip. They did come home earlier than planned, because the baby coughed too much and no one was having fun. But what obviously matters to Jonathan Vander Plaat is that they went in the first place.

"A lot of people are consumed with the disease," he says. "They don't let their child who has it have a life. There are those who build their life around the disease. We want to build the disease around our life."

At two, Meghan Vander Plaat is enchanting and wispy-haired, quite a talker. Her father, a pragmatic man, makes the path that led up to the present sound almost easy. Not so Kris Vander Plaat, who sits beside him at the dining table and apologizes for feeling guilty about her daughter's condition.

"I knew I couldn't help but feel guilty," she says. "I knew there was no way I could change it. I'm a carrier. I have no symptoms, but she's the one who's going to suffer."

Except for her brief hospital stay in 1993, Meghan does not actually seem to have suffered much. She evidently enjoys the gentle pounding she gets, on her upper chest and back and underarms, several times daily, as well as her regular sessions breathing in from the nebulizer, all of it necessary to break up the mucus that builds in her lungs. As far as she knows, the enzymes she must take to help her faulty digestion are just pretty sprinkles on her yogurt. If anything, other children might have reason to envy Meghan all that loving attention.

Meghan does not live inside a glass ball--far from it. She goes into the nursery at church. She has regular contact with other children. Her mother has long since put away the bib that reads "Look but don't touch."

Meghan has been so robust that Kris once actually contemplated asking the doctors whether she could have outgrown cystic fibrosis. But at heart, she knew better. It's in the genes.

What It Means to Be A Carrier, Part II

Carrier status is invisible, but it's hardly insignificant. To many carriers of the cystic fibrosis (CF) gene, Iike Kris Vander Plaat, the ambiguities are painful.

Studies of CF testing programs show that when people are found to be carriers, they have an immediate depression and may have anxiety for long periods afterward. Carrier status implies possessing a flaw and the ability to pass it on, without oneself suffering the consequences of the flaw. Thus carriers may, like Kris, experience survivor syndrome--guilt for having gone untouched by something that has harmed or even killed a loved one.

Carrier status can easily affect relationships--especially future relationships, if the carrier is not currently involved. Outside Dor Yeshorim, the world leaves carriers with the full burden of deciding whether, when, and how to raise the issue. Carrier status may also threaten someone's insurance coverage. Studies by psychologist Joanna Fanos show that even people who are tested and shown not to be carriers can experience survivor guilt and may even wish they were carriers after all. "I felt like, God, why do I get off scot-free?" said one subject who had a sibling with cystic fibrosis. "Give me some burden to carry. I still feel bad about it."

Judging from the recent past, Meghan's prospects look quite rosy. In the less than two decades that separate her from the young man who died before he could graduate from high school, improved medical care has transformed the prognosis for children born with cystic fibrosis.

"My view and that of most CF specialists is extremely different than even ten years ago," says Meghan's doctor at Columbia-Presbyterian, Lynne Quittell. "Now it's not necessary to have to present parents with a death sentence for their children, the way it was ten years ago."

As she speaks, Dr. Quittell is in charge of the care of a sixty-year-old man with cystic fibrosis--an exception, someone at the far edge of the statistical curve, but also a testament to the variability of the disease. She says that one of the leading research scientists in the field, a man old enough to have earned a Ph.D., himself has cystic fibrosis. A 1995 survey showed that one in three young adults with cystic fibrosis worked full time and 90 percent finished high school. Ten years ago, the average life expectancy for cystic fibrosis was about seventeen. Today Meghan can expect to live beyond thirty.

"That may sound like a horrible number to you," says Dr. Quittell, who herself passed that birthday the previous year. "To me it's amazing." Because a field once so desperate is now so full of hope, she adds, "it's a fair statement that most cystic fibrosis caretakers find a death now much more frustrating than it ever was. We're always on the cusp of being able to save them. It's harder to accept the natural history of the disease."

Medication for cystic fibrosis was improving dramatically even before the gene responsible for the condition was discovered in 1989. Isolation of the gene led directly to the root problem: a molecular defect in a channel that carries salts across cell membranes. It may be that the change in salt concentration inactivates a natural antibiotic that protects body fluids.

That knowledge should lead to even better medicines in the near term. Then there's always the possibility, somewhere just over the horizon, that a child like Meghan can benefit from gene therapy--if researchers can find a way to deliver to her cells a functional gene for this channel.

In the same month that Meghan entered Columbia-Presbyterian, Dr. Ronald Crystal began testing gene therapy on a few children with cystic fibrosis, down and across town at the New York Hospital Cornell Medical Center. Earlier, he had tried out his strategy on rats, and found that the gene transfer worked safely. After gaining approval from the hospital ethics board, he proceeded to try the transfer strategy on humans. He infected nine children with a cousin of the cold virus, which he had engineered so that it became a sort of drug delivery system: genetically altered so that it could not cause disease but was able to infect a cell with the gene that creates a normal salt channel across membranes.

"Have we cured the disease? Absolutely not," Dr. Crystal says. "It will take years to prove it." That will require trials in hundreds of patients. "Don't take this as anything but anecdotes," he goes on. There are still many technical problems to resolve and questions to answer. Gene therapy to date has not improved salt transport, and of course the immune system responds to the virus that carries the beneficial gene. What exists now, he adds, is the potential.

"In the same way we knew in the 1980s that finding the gene was going to be a reality, only we didn't know when," says Dr. Quittell, "one day, we're going to wake up and find that gene therapy is a reality." Awaiting that day, she keeps after her families to be faithful in doing the therapy that exists for them today, to use antibiot...

Edition details

• Publisher: Bantam
• Publication date: 1998
• Language: English
• ISBN 10: 0553097091
• ISBN 13: 9780553097092
• Binding: Hardcover
• Edition number: 1
• Number of pages: 416