How should decisions be made for the very young?

Case Study 6:  How should decisions be made for the very young?

Scientists have developed a low-cost, simple gene therapy to treat one form of hereditary deafness.  However, the treatment must be done before a baby is four weeks old.  Susan and Juan both have this form of deafness, and so does their newborn baby, Eric.

Doctors encourage them to give Eric gene therapy so he will be able to hear.  They refuse.  They say deafness is not a defect, and that deaf people live fully rewarding lives with a culture of their own.  They want Eric to grow up in their culture of deafness, and they do not think mainstream society should eliminate valuable differences among people.

Ethical Questions:  Is it ethical for Susan and Juan to refuse gene therapy for Eric?  Should members of the larger society have a voice in their decision?  What about other members from the deaf community?

Personally I don't understand why the parents are going to take the chance to remove deafness from there son and benefit their sons life. However, I do feel that its none of the other members of the society of those who are deaf to take part in this decision because its should be just between the mom and dad. Furthermore, why should the other member take part in the decision and voice their opinion because at the end of the day its not going to affect or change the opinion/decision of the parents. So I do feel that though Susan and Juan and all the right to refuse gene therapy because its their opinion and its their child, so they decide how to teach and support Eric even if there decisions aren't the wisest.

Your Position:

I feel that first of all its none of the other members business because at the end of the day they're not going to be parenting Eric, they're not going to be growing up with Eric. So why should they have such a big say in this controversial topic. But, they can give their opnion to just to show the different pros and cons of this topic for some help but not an actual say. However, I do feel that parents Juan and Susan should take the chance to remove deafness from their son as it does benefit his life and the opportunities he receives in life. Because if he is deaf he is limited to certain jobs and the truth is though the parent may argue it doesn't matter, how can the son, for example, be a teacher or operator if he cant hear anything. Overall, yes, I do believe the parents should take gene therapy for Eric.