Date	Event	Description
25 November 2013	Review declared as stable	This review is no longer being updated because further research evidence is not likely to be generated. Newborn screening programmes are designed to minimise the identification of carriers of mutations so the numbers identified are very low. For instance, in England where nearly 700,000 newborns are screened each year, during 2011‐2012 newborn screening identified: 2 carriers and 141 probable carriers of cystic fibrosis; and 1 carrier for medium chain acyl‐CoA dehydrogenase deficiency (MCADD) (UK NSPC 2013). Mounting a trial large enough to generate reliable evidence from controlled trials would require multicentre collaboration across national boundaries for a complex, ethically challenging counselling intervention. A more recent systematic review (Kai 2009) identified one pilot randomized controlled trial published in 2005 (Lagoe 2005). Rather than evaluating the effects of disclosing newborn carrier status to parents it used the sweat testing visit during screening for cystic fibrosis “to educate parents about the value of carrier testing for themselves and their blood relatives” and therefore it does not fit the inclusion criteria of this review. Notably, the numbers eligible for the trial were low: 63 newborns in a year near Rochester, New York, where parents of 39 newborns consented to enter the study. More useful than updating this systematic review would be a range studies, in various countries, addressing the recommendations for research made in 2009 (Kai 2009).