103489/Z/14/Z: My Condition, My DNA

Project Summary:Next Generation Sequencing (NGS) offers great potential for the effective diagnosis and management of many genetic conditions. In 2013, the UK Government committed to introduce NGS into mainstream clinical practice. The information generated by NGS raises ethical and societal issues around data storage and sharing, ownership and access, consent, disclosure of incidental findings and reproductive decision-making, amongst others. Policy makers, NHS commissioners and clinicians will need to address these issues as NGS enters UK healthcare. The views of the patients and families who will be the end-beneficiaries of NGS technology are fundamental to this process. Their perspective should be central to shaping its uptake in UK healthcare. Our project will generate their viewpoints through innovative activities and will be communicated to decision-makers. The 'My Condition, My DNA' project involves stimulating informed debate about NGS through: 1. A series of six Engagement Events (EEs ) via free online and smartphone apps to generate the views and priorities of 50 patients and families affected by a range of genetic conditions. Issues will be introduced through case-studies and scenarios of families like their own, making decisions about how they want NGS technology used in their healthcare. 2. Creating a 'Patient and Family Charter', based on the findings of the EEs. 3.A Round Table event to disseminate the Charter, with invited individuals and groups responsible for deli vering NGS technology into UK healthcare, taking the patient and family perspective to the centre of NGS policy-making and shaping its delivery for patient benefit.

Grant Holder:Mr Nicholas Meade

Financial Year:2013/2014