This work clarifies the role of the best interest standard (BIS) as ethical principle in the medical care of children. It relates the BIS to the ethical framework of medical practice. The BIS is shown to be a general principle in medical ethics, providing grounding to prima facie obligations. The foundational BIS of Kopelman and Buchanan and Brock are reviewed and shown to be in agreement with the BIS here defended. Critics describe the BIS as being too demanding, narrow, opaque, (...) not taking the family into account and not suitable as limiting principle. This work responds to these criticisms, showing that they do not stand up to scrutiny. They either do not apply to the BIS, only apply to misuses of the BIS or criticise a BIS that is not seriously defended in the literature. (shrink)

Although many of the congenital syndromes that used to be lethal no longer are, they are still routinely referred to as “lethal anomalies.” But the label is not only inaccurate, it is also dangerous: by portraying as a medical determination what is in fact a judgment about the child's quality of life, it wrests from the parents a decision that only the parents can make.