Access all areas? Opening up the challenges of sharing data in research | Wellcome Trust Blog

"The explosion of data and processing power in health and medical research in recent years has brought with it many technical, practical and ethical challenges. The Wellcome Trust and several other funders encourage researchers to maximise the use and value of the data they produce by allowing it to be accessed by others,  but public concern about the use (and abuse) of all kinds of personal data is becoming ever more prominent. Fields such as genomics have thrived on a culture of opening up data for researchers who want to use, analyse, interpret and compare it: the Human Genome Project was developed in the spirit of international collaboration and data sharing. But it is a delicate balance to strike between making data accessible as widely as possible, and protecting the interests of research participants and patients who have given consent for their data to be used in research. There are currently many different models of governance for accessing data and these need to be both fit for purpose, and robust enough to handle the proliferation of data, without creating too much of a bottleneck in the research process. Last year the Wellcome Trust, along with the Medical Research Council, Economic and Social Research Council and Cancer Research UK, came together to set up the Expert Advisory Group on Data Access (EAGDA) Its mission is to look into these issues and to provide advice to funders of medical and health-related research on how they can support their researchers in sharing their data widely, but responsibly, and develop good models of governance. With a group of world-leading experts in field ranging from genetics to epidemiology, statistics, law, social science and bioinformatics, EAGDA is international in scope and we want to reach across both disciplinary boundaries and national borders in seeking to understand the rapidly changing landscape of data in research.  Governments, researchers and industry alike are becoming increasingly aware of the potential power of linking different sources of data, but with advances in bioinformatics and the increasing technical sophistication of analysis, it may not be entirely possible to mitigate the risk of individuals being re-identified from their anonymised genetic information.  This is a particular risk if information can be linked to other sources of data such as locations, ages and surnames in public directories. We need to understand how to weigh up the potential risks these advances pose with the potential gains to be had by using these data sets to make exciting health and medical discoveries. Public attitudes towards the use of personal data are often conflicting and contradictory, perhaps understandably so. It is by no means clear how we should navigate the difficult and rapidly changing terrain in light of the proliferation of research data.  This is why EAGDA is looking to open up its thinking about data, by inviting views not only from those who produce and manage research data, but also those who use or wish to use it. EAGDA’s chair, Prof. Martin Bobrow, has written a commentary in this week’s issue of Nature, highlighting the challenges of managing access to data and developing good governance on an international scale. His piece directs readers to a survey we’re currently conducting for shared data users to feed in to EAGDA’S work. If you’re a researcher who uses shared data, I urge you to take a few minutes to complete the survey.  Your input will help give us a clearer picture of the kinds of challenges users face in finding, accessing and using data, and ultimately help to shape EAGDA’s recommendations to funders on how to facilitate the sharing of data resources ..."