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.

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.

Recent work

Governance of data access

Through UK cohort studies, EAGDA has carried out research into the current governance of data access to understand:

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:

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:

Published in May 2014, the final report [PDF 698KB] and its supporting materials [PDF 992KB] make recommendations on how to build incentives and embed cultural change.

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.

Future issues

In future, EAGDA will be exploring:

Meeting minutes

More information

Contact us

If you have any questions, contact Natalie Banner:

Topics

Data sharing

Sharing data helps researchers to access and build on new information and knowledge.

Influencing policy

Science policy affects a broad range of issues, ranging from data sharing and gene editing, to intellectual property and regulation.

Reports and consultations

Read our policy reports and responses to major consultations.