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Ethics and data sharing

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Sharing of data from human research is possible. Everyone can play a role in promoting and supporting sharing of this data.

Research administrators

There are various ways research administrators can support sharing of data:

  • Encourage data sharing by ensuring that ethics forms include relevant questions.
  • Encourage an institutional approach to data management planning by creating or supporting data management planning policies.
  • Support institutional data archives to develop policies for managing sensitive data.

Human Research Ethics Committees

The ANDS Guide on Data sharing considerations for Human Research Ethics Committees is a practical approach to how HRECs can support the safe sharing of sensitive data through:

  • encouraging safe data sharing.
  • requesting that data management plans be attached to ethics applications.
  • providing advice to researchers about designing their research so the data can later be shared.
  • adding a question to your ethics application form: "Is there any reason NOT to share the data from this project?”
  • adding suggested wording to your Institution’s participant information sheets and consent forms that ask for permission from participants to share data.
  • ensuring that researchers intending to re-use data adhere to the original ethics approval conditions for which consent from the original participants was obtained.
  • establishing a framework for considering applications that wish to use new forms of data (e.g. social media feeds, government information, data derived from tracking systems). The OECD provides guidance in their report: Research Ethics and new Forms of Data for Social and Economic research.

Researchers

The ANDS Guide to Publishing and sharing sensitive data offers practical advice to researchers on how to:

  • plan to share data when you design your project
  • seek approval from your human research ethics committee to share your data
  • obtain informed consent from participants to share their data
  • de-identify the data and/or restrict access to it (conditional access).

Understanding Patient Data, a UK based initiative, has evidence based guidance on wording to use with patients when seeking consent to share patient data.

Sharing data ethically poster

Ethics poster

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