What are the ethical and social issues surrounding genetic testing and screening?
Generally, consent is necessary before proceeding with a genetic test or genetic screening. In the case of neonatal screening, the question of the necessity of obtaining an explicit consent is debatable. Most countries that have established newborn genetic screening programs operate without the parents’ explicit consent. In the case of diseases that must be treated immediately, some consider screening to be a part of routine pediatric care and that obtaining explicit consent is therefore not necessary. Parents have a duty to act in their child’s best interests. They have the right to be informed which diseases are screened for, as well as the goals and objectives of a newborn screening program. They may also refuse newborn screening if they wish.