That's not to say that they can't be followed, but perhaps they don't need to be. They're even fearful of being assessed regularly for fear that will indicate that they won't be able to be employed.
Those are very real things that are happening in our practices. Some of the things that happen never come to our attention. The conversations are taking place before we see them in our offices. Also, many of them never reach the geneticists, because those decisions are made before they've had a chance to have proper genetic counselling.