Access, governance and ethics
More than one in 30 people take part in population cohort studies in the UK. Clinical and population health research – which ultimately is for the benefit of the health and wellbeing of the public – relies on patient and public participation. It is therefore paramount that we secure public confidence in medical research. Two areas of particular importance are firstly in relation to consent and secondly, personally identifiable information is protected.
MRC Good Research Practice sets out the principles researchers should follow to ensure that research is conducted within a robust legal, ethical, and regulatory environment, striking the appropriate balance between safeguarding the rights of research participants and ensuring maximal value is gained from publicly funded research data sources. We ensure that our researchers are supported and trained to understand and implement legislative and good practice requirements relating to research involving human participants, their tissues or data. See our Regulatory Support Centre.
Our data-sharing policy applies to all MRC-funded research. It recognises that publicly-funded research data should be accessible to researchers in secure environments that protect participant confidentiality. Our policy requires that researchers make clear provision for preserving and sharing data and tissues, and that research findings must be published within a reasonable time. We are working with other UK research funders to ensure there is a consistent approach to research data sharing and to promote the benefits gained from using personal health data for research. For more information, read our data sharing policy (PDF, 108KB) document.
It is essential that sources of research data and tissues are discoverable to enable new scientific research. We are currently supporting three major initiatives to enable data "discoverability" across clinical trials; tissue samples and biobanks; and population cohort studies.