ESHG welcomes forthcoming consultations on Greek newborn screening programme

The announcement that the Greek government has put its proposed newborn genetic screening programme on hold while scientists produce proposals for a regulatory framework is very welcome, as is the news that public discussions on the scientific, ethical, legal and societal implications of using genomic sequencing in this way will now take place.

As we said in our statement of 11 June, we were concerned that the lack of transparency surrounding the proposed programme could have affected the trust of the public in newborn screening and in healthcare more widely - and not just in Greece. Newborn screening is an important public health initiative, but it should never be carried out without significant public input, which can only be achieved through consultation at every step along the road.

The European Journal of Human Genetics has opened a call for papers* on the use of genetic data in public health screening programmes. We hope that this will contribute further to public discussion on this important issue, and that the Greek story may have served a useful purpose by defining measures to be avoided when developing a successful screening programme.

*https://www.nature.com/collections/djigcbgbif