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What the meeting was about
A one-day facilitated debate to address the following questions from a practical and ethical perspective:
  • Who should participate in the decision making process and what should be the role of parents?
  • How and by whom can parents be best supported in this critical situation?
  • How to use information about long-term disabilities to inform decision-making?
  • How can we achieve consensus in case of divergent views?
  • What is the value of guidelines in such situations?

Experts from a range of disciplines including medicine, law, philosophy and economics were invited to participate. It was the first time that parental involvement in decision making were debated by individuals from so many different European countries, representing a cross-section of attitudes to this highly emotive issue.


The meeting was chaired by Neil Marlow, Professor of Neonatal Medicine, University College London. He is the chief investigator of the EPICure Study, one of the largest longitudinal studies of extremely preterm birth. Neil is currently President of the European Society for Paediatric Research. He was elected as a Fellow of the Academy of Medical Sciences in 2007 and awarded the honour of Honorary Life Friend by Bliss, the UK premature babies charity in recognition of his contribution to clinical care.


For more information on the outcome of the meeting, please refer to our press release



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