A-Review-of-Evidence-Relating-to-Harms-Resulting-from-Uses-of-Health-and-Biomedical-Data-FINAL.pdf (1.93 MB)
Risks of harm from data misuse
journal contribution
posted on 2017-11-20, 11:31 authored by Graeme Laurie, Leslie Stevens, Christine Dobbs, Kerina H JonesOne 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.
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:
Wellcome, Cancer Research UK, the Economic and Social Research Council and the Medical Research Council
