Power of data to improve health

The Law and Emerging Technology group met on Monday 11 December to discuss issues related to data and personalised medicine.

The workshop organised entitled “Big Data and Personalised Medicine: Property, Privacy, Ethics and other Legal Issues” was by Professor Graham Dutfield (School of Law)  Dr Subhajit Basu (School of Law) and Dr Michael Messenger (Faculty of Medicine and Health). It was attended by a diverse array of stakeholders from across the UK working in academia, the NHS, and civil society groups, and took a multidisciplinary approach to the subject.

Discussion at the workshop was productive, and a number of important conclusion were reached on issues such as openness, health, human rights, ownership, privacy and the role of the individual.

Several points points for further discussion where also identified, including the importance of clarifying terms like 'discrimination' and 'ownership' in the wider personal data debate, the need for standardised mechanisms for organisations to make data available within the current regulatory framework and the need to learn from the experiences of other industries and jurisdictions in building the right approach as we move forward.”

The conclusions reached by the workshop represent a significant contribution to the ongoing dialogue around personalised medicine, and the group hopes to build on these achievements to further influence policy in this area.   

A summary of the points debated at the workshop is available upon request from Dr Subhajit Basu (s.basu@leeds.ac.uk)