What are sensitive data and why might they be trickier to publish?
This document discusses sharing sensitive human data legally and ethically. It defines what constitutes sensitive data, including personal or identifiable information that could cause harm or discrimination. Sensitive data includes health, genetic, biometric, and other personal information. The document outlines privacy laws that prevent disclosure of sensitive data without consent. It advises modifying data to protect privacy if possible, obtaining ethics approval, and only sharing data in accordance with the conditions of informed consent. Funders and publishers have policies supporting responsible data sharing. The key takeaway is that sharing sensitive human data ethically is possible if proper plans and procedures are followed to de-identify data and protect participant privacy.
What are sensitive data and why might they be trickier to publish?
- 1. Sarah Olesen, ANDS Sept 3, 2015 1 Health-y sharing of human data: Legally, ethically, responsibly
- 2. 2 Plan to publish Plan responsibly
- 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