10.6084/m9.figshare.5613187.v1
Graeme Laurie
Graeme
Laurie
Leslie Stevens
Leslie
Stevens
Christine Dobbs
Christine
Dobbs
Kerina H Jones
Kerina H
Jones
Risks of harm from data misuse
Wellcome Trust
2017
EAGDA
Expert Advisory Group on Data Access
data access
personal data
Science Policy
2017-11-20 11:31:11
Journal contribution
https://wellcome.figshare.com/articles/journal_contribution/Risks_of_harm_from_data_misuse/5613187
<div>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.</div><div>EAGDA decided to look into:</div><div>- what kinds of harm might result from breaches in research data security</div><div>- whether there was evidence that risks of these harms arise in UK academic research.</div><div>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.</div><div><br></div><div><br></div><div><div>EAGDA supports cohort studies and their Data Access Committees (DACs) by promoting good working practices, consistent governance and transparent decision making.</div><div>It also wants to increase UK input into international policy discussions on data access.</div><div>EAGDA is a partnership between:</div><div>Wellcome, Cancer Research UK, the Economic and Social Research Council and the Medical Research Council</div></div>