Ethics, Consent and Data Sharing ands.org.au Margaret Henty

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

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

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

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

The reality 7  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

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? 8

What researchers can do 1.Incorporate data sharing and dissemination intentions into research planning 2.Discuss these intentions with the institution’s HREC 3.Take practical steps to ensure that data can be disseminated and shared 9

 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 Informed consent 10

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

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

What HRECs can do 1.Ensure that the issue of data sharing and dissemination is addressed in ethics applications 2.Actively support the data sharing aspects of funder requirements 3.Provide advice on what data can be shared and how 4.Provide advice about appropriate data storage and access facilities and support the development of these facilities locally 5.Support the need for data management planning 13

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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. 17

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 18

Clear and simple 19 BYAttribution BY-NCAttribution - Non Commercial BY-SAAttribution - Share Alike BY-NDAttribution - No Derivatives BY-NC-SAAttribution - Non Commercial – Share Alike BY-NC-NDAttribution - Non Commercial – No Derivatives

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 20

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. 21

Any questions? 22