Sharing of data from human research is possible. Everyone can play a role in promoting and supporting sharing of this data.
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.
View Professor Michael Martin, Chair of the ANU Human Research Ethics Committee, discussing de-identified data, research beneficence and risk (65 sec).
View advice on how to plan for data sharing in research ethics applications (9 min).
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.
The Open Data Institute has a Data Ethics Canvas tool you can use throughout a project lifecycle to identify ethical issues around your data, and aid in decision making.
Hear it from the experts
- Is it ethical NOT to share? Data publication meets research ethics (50 sec). Professor Michael Martin, Chair of the ANU Human Research Ethics Committee
- Clinical data disclosure (90 sec). Iain Hrynasckiewicz, Head of Data and HSS Publishing, Open Research Nature Publishing Group and Palgrave Macmillan
- Sensitive data can be shared (40 min). Professor Michael Martin (ANU) provides practical advice about sharing human data as part of ethical research practice and Baden Appleyard, a barrister, offers insight into legal requirements