The Expert Advisory Group on Data Access (EAGDA) was established in 2012 by the Wellcome Trust, Cancer Research UK, the Economic and Social Research Council, and the Medical Research Council to provide strategic advice to these funders on the emerging scientific, legal and ethical issues associated with data access for human genetics research and cohort studies. From October 2014, EAGDA is funded equally between the four partners.
The group, chaired by Professor James Banks, currently has 13 members, with expertise spanning genetics, epidemiology, social scientists, IT, data management and security, law and ethics.
The group provides support to current and future studies and, where relevant, their Data Access Committees (DACs), across the fields of genetics, epidemiology and the social sciences – promoting best practice and encouraging consistency in governance and decision making. It also seeks to enhance the UK’s input into international policy discussions on data access.
EAGDA has recently been working on the following projects:
Best practices for infrastructure development and data curation
In October 2016, EAGDA met with the UK Data Archive to discuss best practices for data curation and infrastructure management.
The aim was to have people from different disciplines sharing their challenges and approaches to managing the increasing volume and richness of data being generated by research.
Mechanisms and governance of data access
EAGDA has been carrying out research through a cross section of genetic, epidemiological and longitudinal studies, to understand:
- the data access systems that have already been developed by the studies
- if they are fit for purpose in the current push towards increased data sharing
- if there should be coordination between studies on data access.
The final report and its supporting materials set out recommendations to EAGDA funders on how to support good governance methods for access to data within their research communities.
The funders issued a joint response to the report.
Risks of data misuse
Jointly with the Nuffield Council on Bioethics, EAGDA resolved to commission a review of evidence relating to harms resulting from security breaches or infringements of privacy involving sensitive personal biomedical and health data.
A research group at the Farr Institute was commissioned in February 2015 to undertake this research. The review feeds into the Nuffield Council’s report on the ethical issues relating to uses of biological and health data.
Incentives for Data Sharing
Funders want to encourage researchers to make their data available where appropriate but are also aware that sometimes there are reasons why they may be unwilling or unable to do this.
In May 2014, EAGDA published a report investigating these issues, and examining how best to incentivise data sharing and what factors help or hinder researchers in doing so, while giving them appropriate credit for their work.
Protecting study participants' confidentiality
Participants of research studies are often reassured that any data they provide will not be traceable back to them. However, as technology advances, it may be possible to piece together data from different sources to identify a person.
In October 2013, EAGDA produced a statement to the funders highlighting issues around which the funders could take action to ensure confidentiality for participants as far as possible. The funders issued a joint response to this statement, accepting its recommendations and identifying key areas in which they could co-ordinate actions to mitigate these risks.
Other topics on the horizon for EAGDA’s work plan include:
- Establishing the costs of data access
- Commercial access to research data
- Values of and barriers to data sharing across borders
- Recognition of and credit for data outputs