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Rare disease research – Moving from study participant to research partner

A quick mention of rare disease day and this call for a progression from the standard of ‘study participant’ to ‘partner in research.’

This is entirely consistent with the calls from the UK Nuffield Council on Bioethics Children and clinical research work: http://nuffieldbioethics.org/project/children-research

Read more: https://hcldr.wordpress.com/2017/02/25/rare-disease-research-moving-from-study-participant-to-research-partner/