Access to the Genome: The Challenge to Equality

By Maxwell J. Mehlman; Jeffrey R. Botkin | Go to book overview

8
Conclusion

Earlier in this book, we distinguished between the "bads" that might flow from the Human Genome Project—the threats to happiness and well-being from genetic testing, discrimination, or eugenics—and the "goods"—the benefits to individuals and society from ameliorating or preventing genetic disorders and from improving upon natural genetic endowments. We said that, contrary to most of the social commentary being written about the Human Genome Project, we were going to concentrate on the issues raised by the "goods"—how individuals can obtain the benefits of the genetic revolution.

In the end, however, we find ourselves heralding another set of worries—that individuals will not be able to obtain access to the new genetic technologies without being able to pay for them and that the resulting maldistribution of genetic advantages will threaten the fundamental principles upon which Western democratic societies are based.

Some will say that the genetic advances that give rise to our concerns are so unlikely or so far in the future that society should not waste time on this subject, and that focusing on it only diverts attention from far more pressing social problems. Several years ago, for example, we attempted to publish an article on allocating access to genetic technologies in a prestigious medical journal, and we were told that the article would be accepted only if we deleted all references to genetic engineering and enhancement.

This view is dangerously naive. Scientists have many exquisitely difficult challenges to overcome before some of these genetic technologies become realities. But as we pointed out in Chapter Two, presently there is no reason to believe that researchers will encounter insurmountable technical hurdles that will block further progress. Given the state of science, there is a good chance that most of the genetic technologies that give rise to our concerns will be developed within our lifetimes.

As we acknowledged in Chapter Six, it is possible that, contrary to our expectations, society will adapt well enough to genetic technologies that unequal access will not be a serious problem. Alternatively,

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Access to the Genome: The Challenge to Equality
Table of contents

Table of contents

  • Access to the Genome - The Challenge to Equality *
  • Contents v
  • Acknowledgments vii
  • 1: Introduction 1
  • 2: The Human Genome Project 7
  • 3: The Practical Applications of Human Genetic Technology 20
  • 4: The Impact of Genetic Technologies 39
  • 5: Access to Genetic Technologies 55
  • 6: Genetic Technologies and the Challenge to Equality 88
  • 7: Responding to the Challenge 110
  • 8: Conclusion 129
  • References 131
  • Index 145
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