ABSTRACT
This chapter is mainly about stepping back and looking at some of the underlying complications which have to be dealt with at some level, especially when talking with people who are very intimately affected by genetic conditions. It considers communication in relation to risk, contradictions, timing and content, children’s competence, and methods and barriers when talking with children. Competence is a relative not an absolute quality, and higher standards should not be expected from children than from adults, or from the parents who may decide for them. When the competence of younger children is respected, they are treated with the same respect accorded to adults. Children with experience of serious illness or disability and treatment, even if they are well below average at school, can have high levels of competence concerning decisions about their health care.
