Babies by Design: The Ethics of Genetic Choice

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Overview

We stand on the brink of unprecedented growth in our ability to understand and change the human genome. New reproductive technologies now enable parents to select some genetic traits for their children, and soon it will be possible to begin to shape ourselves as a species. Despite the loud cries of alarm that such a prospect inspires, Ronald Green argues that we will—and we should—undertake the direction of our own evolution.

 

A leader in the bioethics community, Green offers a scientifically and ethically informed view of human genetic self-modification and the possibilities it opens up for a better future. Fears of a terrible Brave New World or a new eugenics movement are overblown, he maintains, and in the more likely future, genetic modifications may improve parents’ ability to enhance children’s lives and may even promote social justice.

 

The author outlines the new capabilities of genomic science, addresses urgent questions of safety that genetic interventions pose, and explores questions of parenting and justice. He also examines the religious implications of gene modification. Babies by design are assuredly in the future, Green concludes, and by making responsible choices as we enter that future, we can incorporate gene technology in a new age of human adventure.

 

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Editorial Reviews

Science Books & Films

"By providing examples, contextualizing issues within the framework of stories in popular fiction, and presenting a balanced view of the topics, the author allows the reader to fully explore the issues embedded in the scientific transformation created by the genomic revolution."—Nancy A. Ridenour, Science Books & Films

— Nancy A. Ridenour

Commonweal

“Green has written for a broad readership of nonspecialists. . . . accessible and engaging--qualities that are rare in the bioethics literature.”--Commonweal

Economist

“In this clear-eyed and generally optimistic book, both promise and risk are ably weighed and balanced. The science is clearly explained, and there are signposts to help guide us through the moral maze.”—Economist

Nancy A. Ridenour

"By providing examples, contextualizing issues within the framework of stories in popular fiction, and presenting a balanced view of the topics, the author allows the reader to fully explore the issues embedded in the scientific transformation created by the genomic revolution."—Nancy A. Ridenour, Science Books & Films

— Science Books & Films

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Product Details

  • ISBN-13: 9780300125467
  • Publisher: Yale University Press
  • Publication date: 11/28/2007
  • Pages: 288
  • Product dimensions: 6.60 (w) x 8.46 (h) x 1.04 (d)

Meet the Author

Ronald M. Green is Eunice and Julian Cohen Professor for the Study of Ethics and Human Values and director of the Ethics Institute at Dartmouth College. He was founding director of the Office of Genome Ethics at the National Human Genome Research Institute of the National Institutes of Health. He is the author of six previous books, most recently The Human Embryo Research Debates: Bioethics and the Vortex of Controversy. He lives in Norwich, VT.

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Read an Excerpt

Babies by Design
The Ethics of Genetic Choice
By Ronald M. Green
YALE UNIVERSITY PRESS
Copyright © 2007 Ronald M. Green
All right reserved.

ISBN: 978-0-300-12546-7



Chapter One
Creating the Superathlete

The first efforts to enhance human genetic traits may well take place in athletics. Athletes' willingness to accept risks in order to win makes them good candidates for gene modifications aimed at improving performance. The intense commitment that many parents now bring to a child's athletic career suggests that some parents may be willing to cooperate with reproductive specialists to increase their chances of bringing a future sports champion into the world.

In the past few years, molecular biologists have identified genes for a number of traits that directly affect athletic performance. The work of the University of Pennsylvania Medical School scientist H. Lee Sweeney is particularly striking. Starting in the late 1990s, Sweeney and his collaborators sought to find new ways to combat the wasting effects of muscular dystrophy and aging. They knew that a naturally occurring substance, insulinlike growth factor I, or IGF-I, multiplies the number of cells responsible for the growth of muscle tissue. They also knew that if they injected IGF-I directly into muscle tissue, it would dissipate within a matter of hours. So Sweeney's team took a new tack. They isolated the sequence of DNA that manufactures IGF-I in our cells and, using recombinant gene techniques, inserted it into a population of harmless viruses that readily infect muscle tissues. They then exposed mice to the virus, hoping that the viruses would insert some of their genetic instructions for making IGF-I into the mice's DNA. Because these instructions reside in the genes, they'll produce IGF-I as long as the cells remain alive.

The results were remarkable. After injecting this altered virus into young mice, Sweeney's team found that the overall size of the muscles and the rate at which they grew were 15 to 30 percent greater than normal, even though the mice were sedentary. When the scientists injected the virus-gene combination into the muscles of middle-aged mice and allowed them to reach old age, their muscles did not become any weaker with age.

To further evaluate this approach, a colleague of Sweeney's at Harvard University, Nadia Rosenthal, altered the gene sequence in early-stage mouse embryos to create a line of mice that were engineered to overexpress IGF-I throughout their skeletal muscles. What resulted was a race of super strong rodents that Rosenthal dubbed "Schwarzenegger mice." The animals developed normally, except for having skeletal muscles that ranged from 20 to 50 percent larger than normal. As the mice grew older, their muscles retained the regenerative capacity typical of younger animals. Furthermore, their IGF-I levels were elevated only in the muscles, not in the bloodstream. This is important because high-circulating levels of IGF-I can cause cardiac problems and increase cancer risk. Together, Sweeney's and Rosenthal's research proved that it is possible to genetically enhance muscle function and delay muscle degeneration, whether by gene therapy methods using viral vectors or by the direct modification of an embryo's genes.

Soon after the popular press picked up the story, Sweeney began receiving telephone calls from coaches and players around the country asking whether his research could be applied to human athletes. Some of the callers were interested in the finding that the injection of gene-altered viruses directly into the muscles could not be readily detected by standard blood-testing methods. In the minds of at least some athletes, Sweeney had found a way of enhancing performance that evaded the usual methods of drug detection. Although Sweeney and his colleagues began their research hoping to provide treatments or cures for disease and age-related muscle wasting, they had opened the door to gene doping.

Scientists have since explored several other approaches to enhancing muscle function. In addition to IGF-I, attention has focused on myostatin, a naturally occurring protein that seems to limit muscle growth throughout embryonic development and adult life. Mice that are genetically engineered to lack this antigrowth factor have considerably larger muscles than normal mice. Now scientists are looking at ways of inhibiting myostatin activity in muscle tissues as a means of repairing or improving muscle performance. Commenting on these findings, the physician-geneticist Philip R. Reilly observes, "My guess is that use of anti-myostatin drugs will surface as an issue in professional sports within the next few years."

Investigators have also begun to explore some of the ninety other gene or chromosome variants that are associated with outstanding athletic abilities. For example, some athletes have genes that naturally endow them with a higher percentage of oxygen-carrying red blood cells. This is especially valuable in sports that involve extended exertion, like marathon running or professional bicycle racing. In 1998 the Tour de France was nearly cancelled after an assistant for the Festina team was caught with hundreds of vials of erythropoietin (EPO). The illicit use of erythropoietin by racing competitors to grow red blood cells shows how attractive this advantage can be, and makes the possibility of less detectable genetic means of improving oxygen transport of great interest. In a different direction, Australian researchers recently examined a gene called ACTN3 in a group of male and female sprinters. A small variation in this gene apparently gives rise to a higher proportion of the fast-twitch muscle fibers used in high-speed, short-distance events. The scientists found an unusually high frequency of this ACTN3 variant in these elite sprinters. In particular, more of the female athletes had two copies of the variant than would be expected in a randomly selected group.

The possibility of gene manipulation has already drawn the attention of sports authorities. The International Olympic Committee's World Anti-Doping Agency (WADA) has sponsored several scientific summits to determine whether it is possible to develop means of detecting altered gene sequences in the body. At least one leading gene therapy researcher, Theodore Friedmann of the University of California, San Diego, believes it is. According to Friedmann, every biomedical intervention leaves its traces. Genes altered in leg muscles, for example, are likely to cause small but detectable patterns of altered protein expression in cells elsewhere in the body. The challenge before the scientists working with anti-doping agencies is to develop the sensitive assays needed to detect these changes.

But why should they? What's wrong with gene doping, and why shouldn't we regard it as just another tool, like better food or innovative training techniques, to improve competitiveness? It is true that steroids and EPO carry serious risks for their users. A whole generation of East German women athletes was exposed to serious endocrine problems leading to the growth of body hair, other masculine attributes, and sterility when their coaches surreptitiously gave them high doses of steroids. Hundreds of those athletes have applied for post-injury compensation, and many more who were injured have remained silent out of shame. In the late 1980s, before athletes figured out how to use the drug, about twenty Dutch and Belgian cyclists died when their EPO-thickened blood caused cardiac arrest. Some fear that unusually strong muscles might tear away ligaments or tendons during intense competition. But since gene therapy can be aimed only at improving performance in peripheral muscles, there is good reason to think that it will have fewer harmful systemwide effects than steroids or EPO. Why, then, are there ethical objections?

Kevin Joseph's novel The Champion Maker (2005) offers us a fictional glimpse into the world of gene enhancement in sports. It gives us a way to imagine the opportunities and problems of this technology and anticipate some of the moral choices before us. It is a good place to start our journey into the world of gene modification and enhancement.

The hero of The Champion Maker, Stanley "Bullet" Gardner, is a brash teenager more interested in drinking beer and playing rock music with his garage band than pursuing high school studies, but his running abilities amaze his friends and attract the attention of Nick Vance, a writer for Running Strong magazine. Nick's own track and field career was terminated by the U.S. Olympic boycott after the Russian invasion of Afghanistan. That and the suicide of his young wife sent Nick into a two-decades-long downward spiral. In Bullet, Nick sees the chance for a great story and, possibly, his own redemption as coach and advisor.

Bullet wants to compete in the Olympic qualifying trials for both the 100-meter and the 1,500-meter events. Realizing that these require very different skills, Nick counsels against the dual effort. He relents when he witnesses Bullet's exceptional abilities. After intensive training, Bullet wins both races.

Then, just weeks before the Olympics, everything goes wrong. The U.S. Doping Prevention Agency and World Track Federation accuse Bullet of using gene doping to enhance his abilities. Tests reveal that he has an exceptionally high level of hemoglobin in his blood, enhancing his metabolism of oxygen. His muscle fibers show signs of a gene variant that allows rapid switching between long-distance and sprinting capabilities. Bullet denies any involvement with drugs or gene therapies.

Aided by Tori Lee, a Washington sports lawyer, Nick solves the mystery. He learns that Bullet is one of many young people produced during the Cold War by a covert Defense Department research program known as Double Helix. Directed by an ex-Nazi geneticist, Lothar Schenck, the program aimed to produce superhumans for war and international competition. Using assisted reproductive technologies to modify early-stage embryos, it produced 620 children with genetically enhancedintelligence,longevity,strength,speed,endurance,andagility. Shortly after their birth to surrogate mothers, the children were placed for adoption with parents who were sworn to secrecy.

Nick, Bullet, and Tori fight to prove Bullet's innocence. The novel reaches its climax in the courtroom of U.S. District Court Judge Harold Thornberg, where Tori fights the doping charges. She asserts that it is impossible to separate the role played by Bullet's genes in his success on the track from his determination and enormous training efforts. "For every Stanley Gardner out there setting records, your honor," she says, "there are most likely scores of lazy, uninspired human beings with the same natural gifts but without the dedication necessary to be a champion."

But the heart of Tori's plea is her claim that Bullet's genetic status does not violate the anti-doping code's definition of gene or cell doping as the "non-therapeutic use of genes, genetic elements and/or cells that have the capacity to enhance athletic performance." Although she acknowledges the argument of the chief attorney of the World Track Federation (WTF) that the prohibition seems to apply to any kind of gene manipulation, she contends that it does not cover preconception manipulations. Its real purpose, she insists, is to prevent athletes from abusing gene therapy, not to check the participation of so-called designer babies in sports-it is intended to avoid the imminent menace, not the future threat. She adds that a rule barring someone from athletic competition because of genetic attributes that they inherited but did nothing to produce would exclude from competition such world-class athletes as Tiger Woods, Lance Armstrong, and Michael Phelps.

Judge Thornberg is moved by Tori's arguments, but he worries that allowing unfettered genetic engineering "will make a sham of international athletics by rewarding those countries with the resources and know-how to build the strongest and fastest athletes."

In the end, events outside the courtroom, not the judge's opinion, settle the matter. Lothar Schenck resorts to violence to protect his program, forcing the Department of Defense to intervene. Schenck is removed from command of the Double Helix program, and the WTF is urged to withdraw its opposition to Bullet's participation in the upcoming events as long as he retires from competition after the Olympics. The novel ends happily with Bullet winning two gold medals, and Nick marrying Tori and opening a runners' training camp.

The Champion Maker may never enter the ranks of great literature. Like many novels that use our anxieties about emerging scientific developments to drive the plot, it serves as an engaging diversion for the beach or airplane. But the very appearance of this book is important. It signals a growing awareness of gene doping and suggests that, along with anabolic steroids and human growth hormone to build muscle and EPO to multiply red blood cells, genetic interventions may soon be used to boost athletic performance. It adds to the debate about what kinds of genetic modifications we are prepared to permit in athletics-or human life generally. That Tori Lee's courtroom defense of Bullet is not entirely convincing even to Bullet's coach and mentor, Nick Vance, tells us that our moral intuitions about the use of genetics to enhance athletic abilities are uncertain. On the one hand, we worry that the use of genes to produce a race of "über-athletes" could undermine our very notion of sports competition. But we also know that genes play a major role in athletic performance, and we wonder where we should draw the line between what is permissible and what is off-limits.

Safety is not an issue in The Champion Maker. When arguing before the judge, not even the lawyer for the WTF is willing to claim that Bullet has been harmed by the techniques that have made him so extraordinary. Is it fairness, then, that stirs our concern? Certainly it seems reasonable to oppose a concealed innovation that gives one competitor an edge over others. We tend to think that athletes should compete on a level playing field and that artificial performance enhancements distort that field. But even a moment's reflection shows that athletes do all sorts of things to give themselves an advantage, such as improved nutritional programs and intensive training efforts (often designed and assisted by sports medicine professionals). Although anti-doping authorities have banned EPO, many athletes use high-altitude (hypobaric) training regimens and devices to increase the oxygen-carrying capacity of their blood. "Live high and compete low" has become a mantra for some professional sports trainers. Athletes seeking an edge have introduced such equipment improvements as graphite tennis rackets, fiberglass vaulting poles, and Speedo "Fast-skin" neoprene swimsuits. After some initial debate, these have all now have become commonplace in Olympic and professional competition. Tentative efforts by the World Anti-Doping Agency to rein in high-altitude training tents have met with a barrage of criticism from athletes and trainers who have come to rely on these aids.

So not every use of "artificial" technical improvements is unfair. We allow athletes many ways of seeking competitive advantage that go beyond hard work and grit. These start as efforts to tilt the playing field in the individual athlete's favor, but others soon learn to take advantage of them. Only some of these efforts end up being banned as unfair. This usually happens because we have concluded on other grounds that this particular technical improvement should not be allowed. We prohibit steroids not because using them is unfair but because they are physically dangerous and because we do not want to create an environment where everyone is pressured to use them. Once the ban is in effect, we label their use as unfair and regard anyone who does so as a cheat. Fairness, in other words, is not so much an argument against technical innovation as it is the conclusion of an argument based on other considerations. As Andy Miah puts it in his thorough study of gene doping in sports, "The idea that cheating or rule breaking is determined solely by what is outside the rules begs the question as to what ought to constitute the rules in the first place." But this brings us back to the question of why we want to label gene doping as unfair.

(Continues...)



Excerpted from Babies by Design by Ronald M. Green Copyright © 2007 by Ronald M. Green. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Contents
Introduction....................1
1 Creating the Superathlete....................17
2 How Will We Do It?....................33
3 Drawing Lines....................53
4 Challenges and Risks....................81
5 Parents: Guardians or Gardeners?....................107
6 Will We Create a "Genobility"?....................135
7 Playing God....................171
8 The Choices Ahead....................197
Notes....................231
Glossary....................259
Acknowledgments....................269
Index....................271
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