Presented by Sarah Olsen 3 September 2015

1. Sarah Olesen, ANDS Sept 3, 2015
1
Health-y sharing of human data:
Legally, ethically, responsibly

2. 2
Plan to publish
Plan responsibly

3. 3
Get your
buzzers ready!

4. 4
What are sensitive
data?
How does policy
support/conflict with
sharing?
What kinds of
sensitive data can be
shared?
How to plan early for
sharing sensitive data
What/how to ask
permission from
research participants?
How do I ensure the
Ethics Committee will
go for it?
Where does the
Privacy Act come in?
What about cultural
data?
Do these data have to
be modified before
they can be shared?

5. 5
Confessions of
a sensitive soul
CC-BY-SA Aaron Filler, MD, PhD

6. What makes data sensitive?
6
Personal (identifiable) information
+ potential for harm or discrimination

7. 7
Privacy Act (1988, s6)
Personal information
+ one or more of: health info, genetic, biometric, political
opinion, certain group membership…
= Sensitive information
Legally: Privacy Law
Cannot be disclosed without consent

8. Ethically
8
‘any data that contain information that can be used to
identify an individual and introduce a risk of
discrimination, harm, or unwanted attention.’

9. 9
So what kinds of data could be sensitive?

10. Ethically
10
• Informed consent before sharing
• Avoid harm (= remove/minimise sensitivity)
‐ Modify data to protect privacy *if possible*
‐ i.e. Confidentialising data
‐ Conditions around access to data
• Ethics approval

11. 11
Plan to publish
Plan responsibly

12. Sticky carrots
12
• International funders, e.g. National Institutes of Health
• Local funders, e.g. NHMRC and ARC
• Publishers, e.g. PLOS, BMJ
• Local policy – WA Whole of Govt Open Data Policy
https://grants.nih.gov/grants/sharing.htm
https://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharing
http://journals.plos.org/plosone/s/data-availability; ttp://www.bmj.com/content/350/bmj.h2373

13. Carrots for researchers
13
5. Efficiency – time and
cost
6. Ethics – participant
fatigue, getting needed
information out there
quickly

14. 14
Sharing and re-using human data
is ethical
??

15. 15link

16. ANDS Guide
Publishing and Sharing
Sensitive Data
http://www.ands.org.au/datamanageme
nt/sensitivedata.html

17. 17
Opennesssssss of data
Can human data be open?
Depends on consent, identification, ethics approval

18. 18
‘Open / Shared / Closed: The world of data’
CC-BY-SA Open Data Institute link

19. Take away
19
• It can be done!
• Plan to publish; plan responsibly
• Ask about: participant consent? ethics approval? modify data first?
• Conditional access? Or a public and restricted version of data?
• Publish metadata