Access to the Genome: The Challenge to Equality

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

7
Responding to the Challenge

The previous chapter described what might happen in the future if genetic technologies were distributed in the manner in which society now provides access to medical technologies. We predicted that the distribution of genetic benefits might be so imbalanced that democratic society as we know it could not be sustained. Can this possibility be avoided?

As described in Chapter Five, we currently allocate access to medical technologies through a combination of governmental and private-sector activities. If the socially destructive effects of genetic technologies can be prevented, one solution might be to reduce the role of government and give the private sector greater freedom to control the allocation of scarce genetic resources.

If governmental restrictions were eliminated completely, then only those who could afford to purchase genetic technologies, or who were lucky enough to receive financial assistance from family, friends, or charities, would gain access to these services. This would exacerbate, rather than alleviate, the societal threats posed by denying genetic benefits to significant segments of the population.

Can charities be expected to make genetic technologies widely available to those who cannot afford them? If so, then government interference with the genetic marketplace may not be necessary.

There is historical precedent for expecting private philanthropy to provide access to new medical technologies. In the 1930s researchers developed artificial respirators to enable polio victims who could not breathe on their own to survive. The cost of these so-called "iron lungs" was beyond many people's means. Eddie Cantor and a group of celebrities formed an organization called the March of Dimes, which called upon everyone to contribute dimes to defray the costs of iron lungs and polio research. Evidently the effort was successful, for there is no record of any polio victim being denied an iron lung because of inability to pay. (Eventually the need for this type of philanthropy was largely eliminated by the development of the polio vaccine in the 1950s, and the March of Dimes turned its focus to raising funds on behalf of victims of birth defects.1)

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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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