Ethics and best practices in sharing individual-level research data

Research funders, regulators and researchers are increasingly calling for the sharing of individual-level data from biomedical and public health research. Despite its potential importance and the ethical arguments in favour of it, data sharing presents important ethical, social, and institutional challenges. Effective and appropriate data sharing requires the development of models of good data sharing practices which:

• maximize potential benefits;
• minimize risks of harm;
• ensure that the rights and interests of stakeholders are respected;
• are capable of obtaining and maintaining stakeholders’ trust and confidence.

This course outlines ethical aspects of sharing individual level research data and proposed best practices. It aims to be of value to those designing and reviewing individual research protocols where data sharing is anticipated, and to those developing institutional policies and processes for governing data sharing.

Objectives:
Upon successful completion of this course, you should be able to:

• Describe potential benefits of sharing data;
• Identify ethical challenges raised by sharing individual-level research data;
• Describe proposed best practices in governing and sharing research data.