A paper analysing the challenges posed by genetic research and EU law was recently published in the Journal of Law and the Biosciences. It sheds light on the problems arising from the General Data Protection Regulation (GDPR) and its application in the EU Member States. Although the GDPR intends to ...

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In May 2018, Australia Health Minister Roger Cook has welcomed the decision of Newborn Bloodspot Screening (NBS) programs across Australia to unite in a national approach. Indeed, in Australia, NBS is provided by programmes funded by State and Territory governments, thus work independently from one ...

At the end of May 2018, Paloma Tejada, Director of Rare Diseases International (RDI), delivered an official statement at the World Health Assembly of the World Health Organisation (WHO) in Geneva. It called to “not leave behind significant but often neglected rare diseases, each of which affect re...

Best Practices for Newborn Screening Early detection, diagnosis, and treatment of newborn diseases are critically important. Timely newborn screening can prevent death and improve patient care outcomes. CLSI newborn screening laboratory standards provide test collection instructions, as well as info...