Expert Advisory Group on Data Access
The Expert Advisory Group on Data Access (EAGDA) provides strategic advice to its funders about the scientific, legal and ethical issues of data access for cohort studies and human genetics research.
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What is EAGDA?
EAGDA supports cohort studies and their Data Access Committees (DACs) by promoting good working practices, consistent governance and transparent decision making.
It also wants to increase UK input into international policy discussions on data access.
EAGDA is a partnership between:
It began in 2012 and has been funded equally between the four partners since October 2014. We provide the secretariat.
EAGDA has 13 members [PDF 102KB] with expertise spanning genetics, epidemiology, social sciences, statistics, IT, data management and security, law, and ethics.
The current Chair is Professor James Banks. Professor Martin Bobrow was Chair from June 2012 to October 2015.
Governance of data access
Through UK cohort studies, EAGDA has carried out research into the current governance of data access to understand:
- the data access systems that have already been developed by studies
- their fitness for purpose in the current push towards increased data sharing
- if there should be coordination between studies on data access.
The final report [PDF 748KB] and its supporting materials [PDF 1.3MB] 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 [PDF 50KB].
Risks of harm from data misuse
One concern that is often raised about data sharing is the risk of harm or distress to research participants if their personal data is misused.
EAGDA decided to look into:
- what kinds of harm might result from breaches in research data security
- whether there was evidence that risks of these harms arise in UK academic research.
In February 2015, the Nuffield Council on Bioethics and EAGDA commissioned the Farr Institute to review the evidence relating to harm resulting from the misuse of personal data.
The review feeds into Nuffield’s report on ethical issues of using biological and health data.
Incentives to support data access
Funders want to encourage researchers to share their data where appropriate. But there are many reasons why researchers may be unable or unwilling to invest the time and resources needed to make their data available.
In 2013, EAGDA carried out a study to find out:
- what factors help and hinder researchers in making the data they generate more widely available
- how to create incentives to promote data sharing.
Protecting research participants’ confidentiality
Research participants are often given a guarantee that the data they provide will not be traceable back to them. But as technology develops it may be possible to use data from different sources to piece together a person’s identity.
In 2013, a method for doing this using genomic data was developed. It only worked in a specific set of circumstances, but it proved that re-identification from genomic data could be technically possible.
In response, EAGDA examined the risk of re-identification for participants in genomic studies in the UK. It then issued a statement highlighting how funders can ensure the confidentiality of research participants [PDF 33KB].
The funders issued a joint response [PDF 26KB], accepting its recommendations and identifying how they could coordinate actions to reduce risks to confidentiality.
In future, EAGDA will be exploring:
- legal control over data, especially across jurisdictions
- establishing the costs of data access
- commercial access to research data
- recognition of and credit for data outputs.
- October 2016 [PDF 89KB]
- April 2016 [PDF 100KB]
- September 2015 [PDF 83KB]
- April 2015 [PDF 64KB]
- October 2014 [PDF 51KB]
- March 2014 [PDF 53KB]
- October 2013 [PDF 91KB]
- March 2013 [PDF 53KB]
- October 2012 [PDF 205KB]
- June 2012 [PDF 161KB]
How to share your research data and why you should [PDF 157KB], November 2015. Written by Martin Bobrow, this article first appeared in Funding Insight and is produced with kind permission of Research Professional.
Balancing privacy with public benefit, August 2013. Martin Bobrow sets out the challenges for data access governance.
If you have any questions, contact Natalie Banner