Wondergenes: Genetic Enhancement and the Future of Society / Edition 1

by Maxwell J. Mehlman

Overview

Wondergenes not only imagines a future world in which genetic enhancement is the norm, but asserts that this future has already begun. Genetically engineered substances are already in use by athletes, in vitro fertilization already provides the primitive means by which parents can "select" an embryo, and the ability to create new forms of genetically engineered human beings is not far off. What happens when gene therapy becomes gene enhancement? Who will benefit and who might be left behind? What are the costs to our values and beliefs, and to the future of our society? To answer these questions, Maxwell J. Mehlman provides an overview of the scientific advances that have led to the present state of genetic enhancement and explains how these advances will be used in the future to redefine what we think of as a normal human being. He explores the ethical dilemmas already facing researchers and medical practitioners, and the dilemmas we will all be expected to face. In his forecast of the dangers inherent in this technology, he is particularly concerned with the emergence of a "genobility" made up of those able to afford increasingly expensive enhancement.

Wondergenes is a serious, accessible introduction to the social and personal implications of genetic engineering. Mehlman weighs the social and economic costs of the many proposals to regulate or limit genetic engineering and provides six concrete policy recommendations—from professional licensing to a ban on germ-line enhancement—that propose to make the future of genetic enhancement more equitable and safe.

Product Details

ISBN-13:	9780253342744
Publisher:	Indiana University Press
Publication date:	09/16/2003
Series:	Medical Ethics
Pages:	240
Product dimensions:	6.12(w) x 9.25(h) x (d)
Age Range:	18 Years

About the Author

Maxwell J. Mehlman is Arthur E. Petersilge Professor of Law and Director of the Law-Medicine Center, Case Western Reserve University School of Law, and Professor of Biomedical Ethics at the Case Western Reserve University School of Medicine. He is co-author of Access to the Genome: The Challenge to Equality and co-editor of the Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology. He lives in Cleveland, Ohio.

Read an Excerpt

Wondergenes

Genetic Enhancement and the Future Of Society

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By Maxwell J. Mehlman

Indiana University Press

Copyright © 2003 Maxwell J. Mehlman
All rights reserved.
ISBN: 978-0-253-34274-4

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CHAPTER 1

An Announcement at the White House

"Nearly two centuries ago, in this room, on this floor, Thomas Jefferson and a trusted aide spread out a magnificent map — a map Jefferson had long prayed he would get to see in his lifetime. The aide was Meriwether Lewis and the map was the product of his courageous expedition across the American frontier, all the way to the Pacific. It was a map that defined the contours and forever expanded the frontiers of our continent and imagination.

"Today, the world is joining us here in the East Room to behold a map of even greater significance. We are here to celebrate the completion of the first survey of the entire human genome. Without a doubt, this is the most important, most wondrous map ever produced by humankind."

With these remarks, made before a White House audience on June 26, 2000, President Clinton announced the successful sequencing of the human genome.

As he spoke, the president was flanked by two men. One of them, Francis Collins, had inherited in 1984 the mammoth government decoding program, known as the Human Genome Project, from James Watson, co-discoverer in 1953 of the double-helix shape of the DNA molecule. Since then, Collins had overseen one of the largest non-defense research programs in history. This moment was the crowning achievement of his career. He had already won fame for discovering the gene for cystic fibrosis in 1989 and for collaborating in the discovery of the Huntington disease gene. Now the president of the United States was giving him credit for successfully completing the Human Genome Project, a science project that, more than any other, could revolutionize life as we know it.

But Collins had reason to be disgruntled. On the other side of the president stood J. Craig Venter, president and chief scientific officer of Celera Genomics. His company also had sequenced the human genome. But unlike the federal project, which had taken nine years and cost $3 billion, Venters company had achieved roughly the same result in less than nine months, at a cost of only $200 million. It was an astonishing achievement by any account, and at the White House, it robbed Collins of center stage.

To be sure, Celera had not started its sequencing program from scratch. Other scientists had perfected some of the techniques that Celera had employed, like recombining DNA, and Celera had access to the results of the government project, which publicly posted its newly discovered sequences on the Internet. But Celera had been founded by visionaries, and they employed many clever expedients. Instead of using semi-automated sequencing machines, which required hand loading and unloading, Venter employed fully automated machines developed by a company called PE, which had changed its name from Perkin Elmer after defects in its mirror had crippled the Hubble space telescope. Celera had used a lot of these automated machines, three hundred of them in fact. And they had run them around the clock.

The cleverest stratagem of all was the way Celera used computers to analyze the data that the sequencing machines produced. At the time, as noted in the Introduction, Celera was employing the largest non-governmental supercomputing capacity in the world.

When Celera first started up, some of the scientists working on the government's Human Genome Project had been skeptical and disparaging. They said that Celeras "shotgun approach" — another of its innovations, which enabled the order of small fragments of DNA to be determined rapidly — would not work. Celera might be able to decode the DNA sequences, but it would not be able to patch all the fragments back together in the proper order. Celera countered that it would not only reassemble the fragments, but would produce a complete sequence sooner than the government.

Francis Collins, as head of the government project, took up the gauntlet. He vowed to complete a "rough draft" of the human genome by 2000 and a final version by 2003, rather than by the original target date of 2003. With this, what had been an intense scientific rivalry became a flat-out horse race. When Venter scoffed that the Human Genome Project would fail to meet this timetable, scientists working on Collins's project reiterated that Celera would not be able to reassemble its fragments into an accurate map. The race heated up even more when the Human Genome Project began cranking out large sequences in keeping with its new schedule. Celera in turn defied its critics by publishing an accurate sequence of the fruit fly genome.

Ari Patrinos decided to intervene. Patrinos headed up a portion of the Human Genome Project run by the Department of Energy. This was a smaller program than Collins's at the NIH. Congress had created it in recognition of the DOE's long-standing interest in genetics, dating back to the days when, as the Atomic Energy Commission, it had begun researching the genetic effects of atomic fallout. Determined to achieve a reconciliation between Collins and Venter, Patrinos invited them to his home for pizza. Several more meetings followed, and the two scientists finally agreed to bury the hatchet and make a joint announcement of success. The ceremony took place in June at the White House. The Human Genome Project later published its sequence map in the journal Nature, while Celera published its map in Science.

Only once before had President Clinton stood in front of the White House microphones to speak to the nation about a scientific discovery. This had occurred when scientists declared that they had discovered extraterrestrial life in a fragment of a Mars asteroid. While this discovery, if true, would be astounding, the June 2000 announcement that the human genome had been sequenced marked a "sea change" from the standpoint of human biology, one of the few times that the overused label was appropriately applied. Moreover, the White House genome announcement warranted this characterization even though it was untrue. Neither the Human Genome Project nor Celera actually had completed the sequencing of human DNA. The Human Genome Project had only sequenced 97 percent of the genome and only 85 percent of the sequences had been placed in the proper order. Although Celera claimed it had sequenced 99 percent of the genome, it admitted that it was still piecing the fragments together.

But these were mere details. The important thing was that the sequencing would be completed soon.

What was so important about sequencing the human genome? What does it enable us to do? The answer is not much by itself. It is but one step in a journey, and a relatively initial step at that. But it is a monumental accomplishment nonetheless. The sequence is three billion units long. This is such a large number that science commentators like to use equivalents to describe it, such as a fifteen-foot-high stack of computer printouts, or three full sets of the Encyclopedia Britannica, with each letter standing for a genetic unit. The location and order of this sequence was not completely known by June 2000, but most of it was.

Aside from the sheer size of the achievement, sequencing the human genome is important because the information it reveals is so fundamental. Consider its closest analogy — the periodic table of elements that hung on the wall of your high school chemistry lab. By itself, the table of elements does not do much. But imagine modern science without the knowledge it contains about the basic building blocks of chemistry and physics. Sequencing the human genome serves the same function for human biology. It is a catalogue of the building blocks of life.

But the significance of sequencing the genome goes far beyond serving as a source of basic scientific knowledge. Its significance lies in its trajectory. It is a step, a crucial step at that, on the path to an unprecedented evolutionary destination. At the end lies nothing less than the ability to genetically alter the human species.

The skeptic leaps up. "This is completely ridiculous!" he cries. "Genetic science is far more complicated than that. The complex traits that make up what it means to be human are the product of multiple genes, and of the interaction of these genes with the environment. We will never be able to understand them sufficiently well to manipulate them successfully!" The skeptic is only getting started. How many times, he points out, have researchers claimed to identify genes for human characteristics such as aggressiveness, schizophrenia, homosexuality, novelty-seeking, overeating, even bedwetting, only to have their claims questioned or dismissed by other researchers who were unable to replicate their results? The biggest gaffe of them all was the belief that there were more than 100,000 genes in the human genome. Most scientists now accept a much lower number, closer to 30,000, after the announcement in 2000 that the human genome had been successfully sequenced.

Not only does this error show that we know less than we think we do, the critic asserts, but the fact that there are far fewer genes means that their actions and interactions must be even more complicated than we imagined, for otherwise how can so few genes account for the multitude of the structures and functions of the human body? Even if we understood how these genes functioned, we will never be able to manipulate them to produce complex effects such as improved intelligence or finer motor coordination. And if we tried, we'd invariably end up with numerous failures, like the 277 sheep embryos that died in order to yield one cloned Dolly. While this failure rate may be acceptable in animal husbandry, the skeptic reminds us, it would never meet the conditions for ethical experimentation in humans. Finally, the skeptic concludes, we are being far too genetically deterministic by focusing so much on the role of genes without emphasizing the role of the environment in affecting human behavior and traits. Numerous studies of genetically identical twins separated at birth and reared by different families have demonstrated that they do not turn out the same. "You are emphasizing nature 'to the exclusion of nurture,'" the skeptic cries. He has even coined a new epithet: "You are being genist!"

Much of what the skeptic says is correct. Researchers have yet to identify many genes associated with non-disease traits. The interaction of these genes with each other and with the environment undoubtedly will prove complex. Sorting these things out and understanding how to manipulate them will take time and effort, and will be marked by numerous wrong turns and failures. There is a chance that we may never be able to produce wholesale changes successfully in the human genome.

But there is a good chance that we will. Remember that we are dealing with two revolutions occurring simultaneously. Consider how far and fast we have come in our knowledge of human genetics, and in the ability of our computers to process data. The table of elements was created by Russian chemist Dmitri Mendeleev in 1868, and some of the elements, like mercury and arsenic, had been known for centuries. In contrast, it has taken less than forty years from Watson and Crick's discovery of the physical structure of the DNA molecule, initiating the modern revolution in genetics, to the sequencing of virtually the entire human genome. And you have only to read your e-mail to realize how quickly and profoundly the computer revolution has unfolded.

Still, at least a portion of the rescue scenario at the beginning of this book will probably remain science fiction. Major changes in the physical structure of the body — like the specially developed climbing fingers of the professional rescuer — would have to be programmed genetically at a very early stage of an individual's development, perhaps even in a test tube before a fertilized egg was implanted in the womb. If this technology were perfected, it is unlikely that parents would waste it on highly selective enhancements like special finger pads for their children. They would be more likely to install abilities that conferred broader advantages, so that their children could excel not just at mountain rescue, but in a wide range of social spheres. In short, if genetic enhancement becomes a reality, parents probably will opt for traits like beauty, a photographic memory, or intelligence.

What does this mean for society? Will these children garner a disproportionate share of societal benefits? Will the gulf between the privileged and the poor widen even more? Can democracy survive in such a polarized society? And what happens if the genetic changes that are installed ultimately are so great that we no longer recognize these children as human?

The skeptic may be right that this may not be possible in the near future. But the implications are so profound that we cannot afford to take a chance. And even if the ability to alter the human species is remote, we'd better begin preparing for it.

CHAPTER 2

Scientific Foundations

In the nuclei of the cells in our body are chromosomes. These are long strands of a molecule called DNA (short for deoxyribonucleic acid), wound up tightly to fit in the confined space of the nucleus. Most normal cell nuclei contain two sets of these chromosomes, one set inherited from the mother and one set from the father. Each set normally contains twenty-three chromosomes. Twentytwo of these chromosomes are referred to by number — chromosome 4, chromosome 21, and so on. The remaining chromosome in each set is a sex chromosome, either an "X" or a "Y." A person who has two X chromosomes is female; a person who has an X and a Y is a male.

Human chromosomes can be viewed and photographed through a microscope. The resulting image is called a karyotype (see fig. 1).

Occasionally, people have an extra chromosome in their cell nuclei. This occurs when something goes wrong in the way the cells divide during reproduction. A person who has an extra copy of chromosome 21, for example, has Down syndrome. This is why Down syndrome is also called "Trisomy 21": "trisomy" means "three copies." Some males have an extra Y chromosome. At one time, this was thought to make them prone to violent criminal behavior.

If you took a chromosome, unwound the DNA, and looked through a powerful microscope, you would see the remarkable physical structure that James Watson and Francis Crick discovered in 1953. The DNA resembles a twisted ladder, a shape called a "double-helix." The ladder is composed of a double string of chemicals called "nucleotides," each of which is made up of a sugar, a phosphate, and something called a "base."

To understand the structure of DNA, think of the ladder cut in half down the middle of the rungs. The sugars and phosphates of the nucleotides form the long strip which is the side of the half-ladder. Sticking out from the side are the bases, each forming a half of a rung.

The bases are the important part of the DNA molecule. There are only four bases: adenine, guanine, cytosine, and thymine, known by their initials A, G, C, and T. They can connect or "bond" to one another only according to a strict set of rules. "A" bonds only with "T" and vice versa. "G" bonds only with "C."

In humans and other higher organisms, the two halves of the DNA molecule in the chromosomes spend most of their time joined together, like what you would get if you reunited the two halves of the ladder. Each of the bases that make up a half-rung is connected to the base of the other half-rung according to the bonding rules: an A with aT, a G with a C. Each rung thus consists of a pair of bases, known as a "base pair." The ladder twists around a central axis, forming the famous double helix shape (fig. 2).

If you unwound the DNA in the chromosomes in a human cell nucleus and laid it in a straight line, you would get a double strand more than five feet long. If you added up the base pairs, there would be about three billion. The DNA of lower organisms has fewer base pairs. The DNA of the bacterium E. coli has about four million. Yeast has about fifteen million.

The bases are the important part of the DNA molecule because the order in which they occur, or their "sequence," forms the genetic code of the organism. Along certain stretches of DNA, the sequence of base pairs contains instructions for making proteins. Proteins consist of long, complex chains of chemicals called amino acids, and they form the structural components of cells and tissue and the chemicals that control biochemical processes, called "enzymes." The stretches of DNA that contain the instructions for making proteins are called genes. (The rest of the DNA was originally thought to have no function, and was referred to as "junk DNA." Scientists are now discovering that the non-gene stretches of DNA do perform some functions, such as containing the instructions for telling genes when to make proteins — in effect when to turn the genes on or off.)

(Continues...)

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Excerpted from Wondergenes by Maxwell J. Mehlman. Copyright © 2003 Maxwell J. Mehlman. Excerpted by permission of Indiana University Press.
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

Preliminary Table of Contents:

Acknowledgments
Introduction
1. An Announcement at the White House
2. Scientific Foundations
3. Four Revolutions
4. The Fifth Revolution
5. Safety and Effectiveness
6. Autonomy
7. Authenticity
8. Access
9. Inequality and Unfairness
10. Hubris
11. Solutions
12. Better Solutions
13. Spotting Enhancement
14. Conclusion
Notes
Index

What People are Saying About This

founder of Global Lawyers and Physicians

Mehlman deftly explores this powerfully seductive and socially destabilizing biotechnology, and authoritatively suggests legal steps we humans must take to regulate it if we are to have any real chance to garner its benefits and avoid its species—wide destructive potential. —George J. Annas, author of The Rights of Patients and c

President, The Hastings Center - Thomas H. Murray

Wondergenes is a spirited and lively guide to the promises and perils of genetic enhancement. Well—grounded in the science, [the book] poses the central ethical questions posed by enhancement, explains the legal context, and offers intriguing suggestions for law and public policy.

Editor, The American Journal of Bioethics - Glenn McGee

Wondergenes is Maxwell Mehlman’s wake—up call to a world that hasn’t quite figured out that our genetic future is here.A whole generation of children, senior citizens, and the middle aged are drinking, injecting and pumping chemicals into their bodies to get ‘an edge’ in every aspect of life.Is that good? Is that fair to the rest of the world—or even the rest of the soccer team? Mehlman is brilliant, and this is the most sophisticated discussion of enhancement ever written, covering the ethical, legal and personal issues that are already on our doorstep. This book will be on the shelf of every policymaker, clergyperson, and businessnessperson who wants to ‘get ahead’ on the subject of ‘getting ahead.’

The American Journal of Bioethics Glenn McGee

Wondergenes is Maxwell Mehlman's wake—up call to a world that hasn't quite figured out that our genetic future is here. A whole generation of children, senior citizens, and the middle aged are drinking, injecting and pumping chemicals into their bodies to get 'an edge' in every aspect of life. Is that good? Is that fair to the rest of the world—or even the rest of the soccer team? Mehlman is brilliant, and this is the most sophisticated discussion of enhancement ever written, covering the ethical, legal and personal issues that are already on our doorstep. This book will be on the shelf of every policymaker, clergyperson, and businessnessperson who wants to 'get ahead' on the subject of 'getting ahead.'

Editorial Reviews

"Wondergenes is Maxwell Mehlman's wake—up call to a world that hasn't quite figured out that our genetic future is here. A whole generation of children, senior citizens, and the middle aged are drinking, injecting and pumping chemicals into their bodies to get 'an edge' in every aspect of life. Is that good? Is that fair to the rest of the world—or even the rest of the soccer team? Mehlman is brilliant, and this is the most sophisticated discussion of enhancement ever written, covering the ethical, legal and personal issues that are already on our doorstep. This book will be on the shelf of every policymaker, clergyperson, and businessnessperson who wants to 'get ahead' on the subject of 'getting ahead.'"—Glenn McGee, Editor, The American Journal of Bioethics

"Wondergenes is a spirited and lively guide to the promises and perils of genetic enhancement. Well—grounded in the science, [the book] poses the central ethical questions posed by enhancement, explains the legal context, and offers intriguing suggestions for law and public policy."—Thomas H. Murray, President, The Hastings Center

"Mehlman deftly explores this powerfully seductive and socially destabilizing biotechnology, and authoritatively suggests legal steps we humans must take to regulate it if we are to have any real chance to garner its benefits and avoid its species—wide destructive potential. —George J. Annas, author of The Rights of Patients and c"—founder of Global Lawyers and Physicians

From the Publisher

"Wondergenes is a spirited and lively guide to the promises and perils of genetic enhancement. Well—grounded in the science, [the book] poses the central ethical questions posed by enhancement, explains the legal context, and offers intriguing suggestions for law and public policy." —Thomas H. Murray, President, The Hastings Center

Thomas H. Murray

"Wondergenes is Maxwell Mehlman’s wake—up call to a world that hasn’t quite figured out that our genetic future is here.A whole generation of children, senior citizens, and the middle aged are drinking, injecting and pumping chemicals into their bodies to get ‘an edge’ in every aspect of life.Is that good? Is that fair to the rest of the world—or even the rest of the soccer team? Mehlman is brilliant, and this is the most sophisticated discussion of enhancement ever written, covering the ethical, legal and personal issues that are already on our doorstep. This book will be on the shelf of every policymaker, clergyperson, and businessnessperson who wants to ‘get ahead’ on the subject of ‘getting ahead.’" —Glenn McGee, Editor, The American Journal of Bioethics

Glenn McGee