Data sharing considerations for Human Research Ethics Committees (HRECs)

This comprehensive 11 page Guide provides an overview for items that members of Human Research Ethics Committees (HRECs) can consider when assessing applications which propose to share data.

This Guide is intended for support those on Human Research Ethics Committees to:

• Confidently assess applications that propose to share data
• Understand the processes which ensure safe data management of sensitive data throughout the data lifecycle
• Provide advice to researchers about designing their research so the data can later be shared ethically and legally

Key messages: The data sharing landscape is changing, and increasingly applications to HRECs will be asking for permission to share data, especially as many research funding agencies now either endorse or even require data sharing for publicly funded data collections HRECs can play a role by advising researchers about how they can publish data safely and ethically De-identified sensitive data can legally be shared Information sheets and consent forms should address the possibility of sharing data, in order to obtain informed consent from research participants Sensitive data can be safely shared through: mediated / controlled access; licensing; and a range of mechanisms

The Guide covers:

• The role of Human Research Ethics Committees in data sharing
• Legislation
• Funder guidelines and requirements
• Informed consent and data sharing
• De-identification
• Access control
• Licensing
• Publishers and sensitive data
• Conclusion