Beyond the disorder: one parent's reflection on genetic counselling

As a mother of two sons with adrenoleukodystrophy the author of this paper writes about her experiences of genetic counselling following the diagnosis . She discusses the dilemmas, emotions and aftermath this knowledge has bro ught to her family and the roles she played. Personal concerns are raised a bout the values guiding genetic counselling which, she found, focused on th e technical details without considering the ethical implications arising fr om the new knowledge or the emotional dilemmas of prenatal testing. Same co nsequences of choice and the value of hope are discussed She concludes by c hallenging genetic counsellors to deliver a service which not only provides technical information but is cognisant of the ethical considerations this information may foist upon a family.