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3 - Preventing Genetically Transmitted Disabilities while Respecting Persons with Disabilities

Published online by Cambridge University Press:  03 December 2009

David Wasserman
Affiliation:
University of Maryland, College Park
Jerome Bickenbach
Affiliation:
Queen's University, Ontario
Robert Wachbroit
Affiliation:
University of Maryland, College Park
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Summary

The principal goal of the Human Genome Project and other genetic research is to increase our capacity to prevent or treat human disease. We now devote substantial resources to research furthering the understanding of the genetic basis of various serious disabling congenital conditions. When genes are identified for such conditions, tests can usually be developed that will enable prospective parents to determine their risk of passing on the conditions to their children, or that will determine the presence of the condition in a fetus. Health insurance often supports the costs of this testing. In the future, such testing of a fetus may allow genetic or other in utero interventions to prevent the development of the disabling condition, but there is typically a considerable time lag between the development of genetic tests for a congenital condition and therapeutic interventions to prevent or treat the condition. When individuals pursue such testing now, either before or after conception, they typically do so with the intent of avoiding the birth of a child with the condition that is being tested for. This can be done before conception by employing sperm and/or egg donation in order to eliminate the genetic material of the person carrying the genes for the condition; by using in vitro fertilization and preimplantation embryo testing; or by avoiding conception altogether. It can be done after conception by aborting an affected fetus and trying again to achieve a normal pregnancy.

Type
Chapter
Information
Quality of Life and Human Difference
Genetic Testing, Health Care, and Disability
, pp. 67 - 100
Publisher: Cambridge University Press
Print publication year: 2005

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