Newborn screening for sickle-cell disease : socio-ethical implications

Newborn screening is now integrated into routine neonatal practice in many parts of the world, and the overall ethical acceptability of newborn screening programmes is well recognised.1 Although the procedure corresponds in essence to genetic screening, it is seldom referred to as such and is often categorised as a public health disease prevention programme aimed at early detection and treatment of asymptomatic newborns affected by specific treatable disorders. Accordingly, the overall ethical issues that have been dealt with extensively in the context of medical genetics, such as the principle of autonomy and the requirement for informed decision-making, have been considered less significant with regard to publicly mandated newborn screening, because these newborn public health programmes are believed to be implemented in the paediatric interests of children and therefore override the need for an explicit or written informed consent. The WHO considers that newborn screening should be mandatory if early diagnosis and treatment will benefit the newborn.3 As scientific and genetic technologies advance, classical newborn screening programmes aimed at detecting only preventable diseases are now being revisited and expanded. In some countries, they are being redesigned to include new disorders which are not in total compliance with the long-established WHO criteria of conditions suitable for screening. Using the same blood sample collected to screen