Ethics, Consent and Data Sharing

1. Ethics, Consent and Data Sharing Margaret Henty

3. Explanations • What kind of data are we talking about? • What do we mean by data sharing? • By data dissemination?

4. Who are players here? (which is to say, who needs to know?) • Researchers • HRECs • Research administrators • Data administrators

5. Meeting obligations • National Statement on Ethical Conduct on Human Research • Australian Code for the Responsible Conduct of Research • Funder guidelines • The legal framework

6. Myths • HRECs forbid the sharing of data • Data must be destroyed after a certain time • Ethics clearance once given cannot be amended

7. The reality • HRECs have many issues to deal with and data sharing is just one of them • Much data is shareable but not all • There are three practical steps which researchers can consider if they want to share their data • Planning ahead is the key

8. The Victoria University experience • Ethics form now includes: • Is there any ethical reason NOT to share the data from this project? • Can the information collected on the ethics form be re-used in other places, such as collecting project descriptions for Office of Research reporting purposes?

9. What researchers can do • Incorporate data sharing and dissemination intentions into research planning • Discuss these intentions with the institution’s HREC • Take practical steps to ensure that data can be disseminated and shared

10. Informed consent • Let participants what is going to happen to the data • Don’t preclude data sharing • Three levels of consent • specific • extended • unspecified • Planning ahead is the key

11. Access control • A means of safeguarding sensitive data • Data centres • ADA • ADA Qual • ATSIDA • Your own institution • Licensing • Planning ahead is the key

12. Anonymising data • What do we mean? • Identifiable data, non-identifiable data and re-identifiable data • Techniques • Cost • AV files • Planning ahead is the key

13. What HRECs can do • Ensure that the issue of data sharing and dissemination is addressed in ethics applications • Actively support the data sharing aspects of funder requirements • Provide advice on what data can be shared and how • Provide advice about appropriate data storage and access facilities and support the development of these facilities locally • Support the need for data management planning

17. Life would be much easier if … • Creators of data could set out the conditions around the use of their data • Data users knew precisely what they could do with the data, thereby minimising any legal risks • All in one neat package.

18. Standardised approaches • Make it easier to mash up data • Simplify what can be a complex process • Be applied across the institution. Enter the Creative Commons and AusGOAL

19. Clear and simple

20. AusGOAL (previously GILF) • Focus is on open access • Makes it easy for people to understand the rights of use associated with data (and other formats) • Choose the least restrictive licence for the material • More options than the Creative Commons suite • Minimises risk See ausgoal.gov.au

21. AusGOAL & the research & innovation sector • It is officially expanding into research • ANDS is keen to explore the implications of using AusGOAL for research in universities and other research institutions • ANDS is establishing several implementer groups to discuss the issues • Get in touch with me if you’d like to participate. Margaret.Henty@ands.org.au.

22. Any questions?