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Designing Our Descendants

The Promises and Perils of Genetic Modifications

edited by Audrey R. Chapman and Mark S. Frankel

Publication Year: 2003

The Human Genome Project, discoveries in molecular biology, and new reproductive technologies have advanced our understanding of how genetic science may be used to treat persons with genetic disorders. Greater knowledge may also make possible genetic interventions to "enhance" normal human characteristics, such as height, hair or eye color, strength, or memory, as well as the transmittal of such modifications to future generations. The prospect of inheritable genetic modifications, or IGMs, whether for therapeutic or enhancement purposes, raises complex scientific, ethical, and regulatory issues. Designing Our Descendants presents twenty essays by physicians, scientists, philosophers, theologians, lawyers, and policy analysts addressing these issues from diverse perspectives. In three sections, the authors discuss the short- and long-term scientific feasibility of IGM technology; ethical and religious issues related to safety, justice, morality, reproductive rights, and enhancement; and regulatory issues including the necessity of public input and oversight and the influence of commercialization. Their goal is to open a dialogue engaging not only scholars and scientists but also government officials and concerned citizens. The authors conclude that while IGM cannot be carried out safely and responsibly on humans utilizing current methods, it is important to begin public discussion now to determine whether, and if so how, to proceed.

Published by: The Johns Hopkins University Press

Title Page, Copyright

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Contents

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pp. v-vii

List of Contributors

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pp. ix-x

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Preface

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pp. xi-

Rapid breakthroughs in genetic research, spurred by the Human Genome Project, advances in molecular biology, and new reproductive technologies, are raising the prospect that at some point in the future we will have the capacity to design our descendants. There have already been reports of the birth of children with intentionally...

PART I: Introduction

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1 Framing the Issues

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pp. 3-19

Typically, our society proceeds in a “reactionary mode,” scrambling to match our values and policy to scientific developments. But doing so has serious limitations. The furor over the possibility of applying somatic cell nuclear transfer technology to clone human beings underscores how difficult it is to undertake a serious examination of the...

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2 Germ-Line Dancing: Definitional Considerations for Policy Makers

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pp. 20-36

Just as “good ethics requires good facts,” good policy requires good definitions. That is why the larger parts of so many public laws are devoted to the definition of their key terms: it is in those definitions that the policies find their true mission, their real scope, and their actual...

PART II: Scientific Considerations

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3 Approaches to Gene Transfer to the Mammalian Germ Line

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pp. 39-54

The application of the rapidly emerging techniques of gene therapy to heritable human genetic modification is inevitable. During the past several decades, a number of such methods have been developed and successfully applied to germ-line modification in rodents and a number of larger mammals. These advances have established clearly...

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4 Scientific Methodologies to Facilitate Inheritable Genetic Modifications in Humans

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pp. 55-67

The methodologies described in this chapter are being developed primarily to facilitate somatic cell therapy or improve transplant technologies in humans. However, when fully developed, they may be used to facilitate inheritable genetic modifications in humans. The scientific hurdles facing human germ-line intervention are similar to those in somatic gene transfer research...

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5 Germ-Line Modification in Clinical Medicine: Is There a Case for Intentional or Unintended Germ-Line Changes?

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pp. 68-76

During the past decade, a number of technical advances have reignited the need for thoughtful consideration of the issues surrounding human germ-line modification. The unexpectedly rapid progress by the Human Genome Project has put the sequence of the entire human genome within our grasp.1 Further, improvement in the techniques...

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6 Gene Repair, Genomics, and Human Germ-Line Modification

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pp. 77-92

The initiation of numerous human somatic cell gene therapy experiments, the identification of scores of human genes, the recent growth of human stem cells, and progress in animal germ-line modification—all point to the likelihood of an eventual attempt at germ-line modification in humans. Under what circumstances would the accumulation...

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7 Germ-Line Gene Therapy: Can We Do It, Do We Need It, Where Do We Start, and Where Might It Lead?

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pp. 93-102

Despite several setbacks, somatic cell gene therapy is finally beginning to record some solid clinical successes.1 There is growing optimism that such an approach to the treatment of disease will indeed prove fruitful, and somatic gene therapies for a variety of disorders, both genetic and nongenetic, lethal and nonlethal, are at advanced...

PART III: Ethical and Religious Issues

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8 The Moral Impasse in Human Embryo Research: Bypasses in the Making?

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pp. 105-129

In some cases, new technology creates a bypass around a seemingly intractable moral impasse. For example, before it was possible to diagnose death by neurological criteria, justifiable caution blocked the way to saving lives by transplanting organs from brain-injured patients presumed to be dead. This caution was due to uncertainty...

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9 The Implications of Inheritable Genetic Modifications for Justice

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pp. 190-155

Analysts, characterizing human genetics as the “preeminent science of inequality,” 1 have raised concerns that the benefits and burdens of the genetic revolution will be unequally and unfairly distributed. This literature,much of it dating from the early 1990s, considers the Human Genome Project, genetic testing, reproductive decisions...

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10 The Hidden Eugenic Potential of Germ-Line Interventions

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pp. 156-178

In the early part of the twentieth century, Thorstein Veblen coined the term trained incapacity, which unfortunately has fallen from use. The misfortune is substantial, because while the term is rarely deployed, the social phenomenon that Veblen was characterizing is more a feature of the professions and disciplines today than in his times....

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11 Ethical Differences between Inheritable Genetic Modification and Embryo Selection

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pp. 179-187

Germ-line gene therapy, or inheritable genetic modification (IGM), offers the possibility of preventing serious genetic disorders by replacing defective genes in an embryo with functioning genes. Thus, IGM might be able to treat genetic disease in the embryo, instead of the current method of prenatal diagnosis and selective abortion. In avoiding...

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12 Human Limits: Theological Perspectives on Germ-Line Modification

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pp. 188-198

The prospect of technologies of human self-modification evokes intense religious responses. Religious convictions, even if poorly articulated or conflicted, form the deep ground of popular sentiment from which explicit policy options emerge. Anyone engaged in serious analysis of science policy will be helped by a greater understanding of these...

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13 Germ-Line Intervention and the Moral Tradition of the Catholic Church

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pp. 199-211

From the outset the reader should be clear about the perspective from which this chapter is written. It is an honest effort to state with accuracy and clarity what the moral tradition of the Catholic Church says on the matter of germline intervention. To be precise, it should be noted that only the head of the Church (the pope), general...

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14 Uncountable as the Stars: Inheritable Genetic Intervention and the Human Future— A Jewish Perspective

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pp. 212-237

The first promise of the covenantal relation that forms the basis of Judaism is the one of a predictable fecundity.Abraham is promised children, not empires or kingship.However,while the people of Israel are promised uncountable generativity, it has been an assumption of the texts...

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15 Parental Liberty and the Right of Access to Germ-Line Intervention: A Theological Appraisal of Parental Power

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pp. 238-251

What does the legal and moral right of autonomy imply about a right to have access to the technology of germ-line genetic intervention to alter the inheritance of one’s offspring? Before addressing this question, it is necessary to be clearer about what kinds of autonomy claims are thought to apply in this realm. This requires disentangling...

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16 Inheritable Genetic Modifications: Do We Owe Them to Our Children?

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pp. 252-272

The notion that existing people possess obligations to their descendants is deeply ingrained in most societies.Many believe that one important measure of the character and quality of a person’s life or a society’s actions is the degree to which concerns for future generations are integrated into present decisions. Have we built up savings...

PART IV: Policy Issues

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17 National Policies to Oversee Inheritable Genetic Modifications Research

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pp. 275-295

This chapter presents recommendations for regulating research related to inheritable genetic modifications (IGM). In producing these recommendations, we analyzed current limits that have the potential to apply to IGM, including rules promulgated by the Recombinant DNA Advisory Committee (RAC) of the National Institutes of Health...

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18 Designing Tomorrow’s Children: The Right to Reproduce and Oversight of Germ-Line Interventions

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pp. 296-310

Advances in genetics and reproductive medicine promise to extend our choices beyond whether and when to create children to what sorts of children to create. Today we can avoid having certain sorts of children by analyzing the genes of embryos in vitro and implanting...

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19 To Market, To Market: Efiects of Commerce on Cross-Generational Genetic Change

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pp. 311-325

In this chapter we explore the potential effects of commerce on human inheritable genetic modifications (IGM), whereby interventions are made that affect the inheritance patterns of future generations.We are interested in how market forces will influence their development and use. It is our thesis that forces driving the market, including...

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20 Recommendations for Policy

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pp. 326-332

The technologies of inheritable genetic modifications (IGM) will be highly seductive to those who welcome them as a positive step toward shaping our genetic future. Their appeal, however, must be weighed against the uncertainty associated with their safety and the profound ethical and religious questions raised by conscious efforts to design our descendants. As advances in genetics move us ever more...

Appendix A. Consent Form for Participation in a Study of Inheritable Germ-Line Modification

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pp. 333-346

Appendix B. AAAS Report on IGM: Major Findings, Concerns, and Recommendations

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pp. 347-350

Appendix C. IGM Project Working Group

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pp. 351-354

Index

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pp. 355-370


E-ISBN-13: 9780801881299
E-ISBN-10: 0801881293
Print-ISBN-13: 9780801872310
Print-ISBN-10: 0801872316

Page Count: 384
Publication Year: 2003

Research Areas

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Subject Headings

  • Genetic engineering.
  • Genetic engineering -- Moral and ethical aspects.
  • Genetic engineering -- Government policy -- United States.
  • Medical genetics.
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