Ethics, Consent and Data Sharing

http:// 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?

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Who are players here? (which is to say, who needs to know?)

Researchers HRECs Research administrators Data administrators

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Meeting obligations National Statement on Ethical Conduct on Human

Research Australian Code for the Responsible Conduct of

Research Funder guidelines The legal framework

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Myths

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

The reality

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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?

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What researchers can do1. Incorporate data sharing and dissemination

intentions into research planning2. Discuss these intentions with the institution’s

HREC3. Take practical steps to ensure that data can be

disseminated and shared

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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

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Access control

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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

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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 how4. Provide advice about appropriate data storage and

access facilities and support the development of these facilities locally

5. Support the need for data management planning13

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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.

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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

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Clear and simple

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BY Attribution

BY-NC Attribution - Non Commercial

BY-SA Attribution - Share Alike

BY-ND Attribution - No Derivatives

BY-NC-SA Attribution - Non Commercial – Share Alike

BY-NC-ND Attribution - 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. Margaret.Henty@ands.org.au.

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Any questions?

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