Question

Al and Marsha Jones just had their first child. Marsha had a perfectly normal pregnancy and their son appears, at birth, to be perfectly normal. It is quite a surprise when the doctor calls them a few days after they take the baby home and asks them to bring him in for more tests. The doctor asks that both the mother and father come along because he wants to talk to them. In his office the doctor says that a blood test was done while the baby was in the hospital as required by law. The test shows that the baby might have a genetic disease called phenylketonuria (PKU). However, more tests are needed to be sure. The Jones are told not to worry because there is a treatment for the condition. Neither Marsha nor Al has ever heard of the disease nor has anyone in their family.

1. If all newborns are going to be screened, should parents have a chance to refuse? Please present both sides of the argument. Why should parents have a chance to refuse and why shouldn’t they have the chance to refuse? Please include how these two sides apply to legal and ethical guidelines.

2. After presenting both sides of the argument, please share your own opinion. Should parents have the right to refuse screening? Why do you feel this way?

3. If you were Al or Marsha Jones, what would you do next?

4. Should screening for diseases or defects be allowed when there is no cure or treatment? Why or why not?

Answer 1

1.Genetic disease are mostly incurable and if there is a chance to cure, then the option should not be left down. This is possible only when appropriate screening is done at the appropriate time.A genetic disease which is curable when early identification is done through screening at the right time.

If all newborns are to be screened then the parents has the least rights to refuse for it because it could be a mandatory procedure for all as per the law .In order to protect and prevent diseases and provide a healthy people.

The parents can have a chance to refuse because it can be against the autonomy of the baby. In order to maintain privacy and confidentiality of certain illness to others the parents try to refuse it.

They cannot be given a chance in order to save a child life by screening and starting early treatment.On grounds of religion, culture, beliefs and practices they cannot be given a chance.

2.The parents should have the rights to refuse for screening because doing it can be against their religious practices generation after generations.They feel a sort of guilt when this is done to their baby without their knowledge or consent.

3.Being in the place of AI or Marsha Jones one can raise a legal notice for doing a procedure without parental consent or knowledge. Atleast the parents has to be informed regarding the screening, so that they can get themselves prepared on the day of report. Otherwise it can create a great sense of fear when they are called upon suddenly without any prior discussion.

4.Screening has to be done ,though the baby cannot be cured it can give the family members genetic knowledge about the disease running in their family and how it can be prevented.