| For every pregnancy there is a 3-5% chance of
a child with a birth defect or a genetic disease. The most important
issue in designer babies for these parents is the idea of genetic counseling
when genetic testing is chosen. This idea is supported by almost
all geneticists as well as parents. The
American Society of Human Genetics defines genetic counseling as "a
communication process which deals with the human problems associated with
the occurrence or the risk of occurrence of a genetic disorder within a
family. This process involves an attempt by one or more appropriately
trained persons to help the individual or family: 1) comprehend the medical
facts including the diagnosis, the probable cause of the disorder, and
the available management; 2) appreciate the way heredity contributes to
the disorder and the risk of recurrence inn specified relatives; 3) understand
the options for dealing with the risk of recurrence; 4) choose the course
of action which seems appropriate to them in view of their risk and their
family goals; and 5) make the best possible adjustment to that disorder"
For every parent genetic testing can be a painful and agonizing process.
This counseling allows for the parents to make informed decisions about
their child. If the parents decide not to keep the child this process
can give the parents a support group and people they can talk to.
"Women who choose to interrupt an affected pregnancy grieve and mourn the
loss of the pregnancy as well as the loss of the normal baby that was hoped
for. This double loss is often experienced by a sense of genetic
guilt that parents, especially the mother may feel." If the parents
decide to continue the pregnancy, psychological and medical preparation
can be made for the birth. Garber and Hixon show 5 major components
in the process of genetic counseling: 1) obtaining and interpreting the
family history; 2) establishing and confirming the diagnosis; 3) obtaining
and interpreting the pregnancy history; and 5) explaining fetal risks and
discussing the options available.
With the advent of so many genetic tests and procedures there are many choices to be made about the child. There are choices to be made before the conception of the child. Prospective parents can decide to have genetic testing done on themselves to see if they are carriers for certain genetic disorders. If found to be carriers they can in-vitro fertilization (IVF) and have the fetus tested before implantation. (See Procedures for explanation) This would allow for only unaffected fetuses to be implanted. Or if the couple may be passing on an X linked disorder which only afflicts males, the female fetus can be implanted. Unfortunately, the genetic tests are very expensive and many insurance companies will not pay for the procedures. For each test, there is a lot of laboratory work as well as personnel to get accurate results. Tests which are done for medical reasons such as X linked disorders may eventually be paid for if it can be shown to be a necessity. Even then, it may be a fight to have the insurance companies foot the bill. For some families, the financial burden of an affected child is less than the cost for genetic testing. In a perfect world, money for something so important should not be an issue but in reality the money issue must be a consideration. But this should not be a "service" that only the very wealthy should be able to utilize. Screening for a single disease costs $20,000. Many parents who use fertility drugs to conceive feel looked down upon by society. This feeling may be amplified as genetic testing becomes more readily accessible. It may be hard for parents to admit that they are having genetic testing done because to many that means abortion of children. Society need to be informed of the benefits of genetic testing to be widely accepted. There have been many surveys that show that most Americans think the perfect family consists of the oldest child being a boy with a girl as a second child. As genetic testing and sex selection becomes more readily available parents may be able to design their perfect families. For many people this may be a blessing, it could also help the with population issues because parents would not have to more children to have a child of a certain sex. |
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