Pascha – The only reason why people care is because we are trapped in a society that is obsessed with “Perfection”
If you are of European decent there is a good chance that you have a recessive gene somewhere, or else they wouldnt have started the program because it wouldnt have been an issue.
My Great-Aunt married her first cousin and they had four children who had and died of Niemann-Pick.
Do I have the gene? Maybe. Do I care? No. As long as you dont have the disease, who cares?! We now have this incredible orginization that will hopefully make these dreadful diseases obsolete in the Jewish Community.