It hurts to be accused of paternalism. Nevertheless, since my intention was to stir up some discussion on the subject of disclosure of prenatally established carrier status, I welcome the reaction of Prof. Niermeijer and Dr. Los.
They argue that disclosure ''will enable parents to deal with the genetic problem in their family in a responsible manner.'' Unfortunately they do not tell us their opinion on testing young children for carriership when parents ask for it. I suppose they do not object to such testing as, again, it ''will enable parents to deal with the genetic problem in their family in a responsible manner.'' If this assumption is correct, Prof. Niermeijer and Dr. Los at least support my point that, perhaps, one should not think differently about testing young children and disclosing carrier status established prenatally. However, if their view on testing young children is different, they would help us by explaining where we have to draw the line. Is it birth? Is it whether we are testing for carriership or future disease? Is it whether results are obtained while testing for something else? Is it the height of the reproductive risk?
I hope we will be able to advance the discussion on the basis of well-founded opinions and experience.