HeLEX's Research, Mission, Projects and Collaborations
Our approach is to work alongside scientists to ensure that cutting-edge practice is developed in an ethical manner and in compliance with legal requirements. We are involved in a number of high profile projects such as DIRECT (stratified medicine for diabetes); StemBANNC (Building a repository of stem cell lines) and UK10K (exome sequencing of 10,000 individuals in the UK). Our aim is to develop best practice based on academic research and a clear understanding of emerging trends. We are also exploring the use of new technologies, such as social media tools to develop new governance systems for patient involvement in research. We inform practice by providing advice and support, working on advisory boards, delivering training and helping to develop policy documents that have application at an international level. All of these "outputs" are also our further "input"; the substance of the Centre’s further academic reflection, analysis and research.
Our research is interdisciplinary, using tools and methods of investigation and analysis from the disciplines of law, philosophy and the social sciences. The use of empirical research enables us to understand current and emerging practice in medical research and clinical care. Our analysis of legal requirements and regulatory environments provides a basis for understanding how emerging technologies may be accommodated within these existing frameworks. It also identifies the areas where change is required in order to deal with the particular issues and circumstances raised by emerging technologies. A philosophical grounding enables us to carry out an analysis of the normative principles that exist, or need to be developed for emerging technologies. It is by combining the results of these investigations that it is possible to generate insights for more effective policy making. Any recommendations and solutions developed from our research are legally compliant, based on sound ethical principles and grounded in an understanding of current practice. This approach builds resilient governance infrastructures, improves research integrity and promotes public trust in the research process.