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ANDS presentation from Menzies HIQ Symposium: The Future of Data Sharing in a Changing Landscape

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Presentation from Kate LeMay, ANDS, to the Menzies HIQ Symposium: The Future of Data Sharing in a Changing Landscape on 30 May 2017

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ANDS presentation from Menzies HIQ Symposium: The Future of Data Sharing in a Changing Landscape

  1. 1. Kate LeMay Menzies HIQ Symposium: The Future of Data Sharing in a Changing Landscape Senior Research Data Specialist 30 May 2017
  2. 2. The Australian National Data Service (ANDS) makes Australia’s research data assets more valuable for researchers, research institutions and the nation.
  3. 3. The data sharing landscape
  4. 4. International Funders Many are mandating data sharing
  5. 5. Australian Funders Discovery, linkage Data Management Plan NHMRC Statement on Data Sharing (2016) Human Research Ethics Application (HREA) National Statement on Ethical Conduct in Human Research Code for Responsible Conduct of Research
  6. 6. “NHMRC-funded researchers are encouraged to consider from the earliest stages of research planning how their research data will be obtained, managed, curated, stored and disseminated into an appropriate, publicly accessible database.” NHMRC Statement on Data Sharing (2016)
  7. 7. Journals BMJ 2015;350:h2373 http://journals.plos.org/plosone/s/data-availability http://www.icmje.org/news-and-editorials/M15-2928-PAP.pdf http://www.nejm.org/doi/full/10.1056/NEJMe1601087#t=article
  8. 8. Data sharing is on the horizon
  9. 9. Legal: Privacy legislation
  10. 10. Legal: Privacy legislation Privacy Act 1988 Personal information Sensitive information Health information Sensitive data “data that can be used to identify an individual, species, object, process or location that introduces a risk of discrimination, harm or unwanted attention.” Guide to Publishing and Sharing Sensitive Data http://www.ands.org.au/guides/sensitivedata
  11. 11. Queensland legislation • Hospital and Health Boards Act 2011 • Public Health Act 2005 • Information Privacy Act 2009 (Qld) • Private Health Facilities Act 1999 • Health Quality and Complaints Commission Act 2006 (Qld) • Health Services Act 1991 (Qld) • Information Standards 42 (general) & 42A (health) Seek legal advice at your Institution! http://www.alrc.gov.au/publications/2.%20Privacy%20Regulation% 20in%20Australia/state-and-territory-regulation-privacy
  12. 12. Ethics and informed consent
  13. 13. Ethics • Informed consent • Avoid harm (=remove/minimise sensitivity) • De-identifying data (see ANDS Guide) • Conditions around access to data (mediated access) • Ethics committee approval • See also ANDS recent webinar
  14. 14. Informed consent 1. Avoid precluding data de-identification, publication and sharing 2. State possibility of future data publication 3. State conditions of access 4. Document consent with collected data to inform subsequent users Example wording available in ANDS Guide to Publishing and Sharing Sensitive Data
  15. 15. Something to think about later Open consent for genomic data! Personal Genome Project http://www.personalgenomes.org/ Some useful articles about informed consent for open genomic data http://arep.med.harvard.edu/pdf/Lunshof08.pdf http://lsspjournal.springeropen.com/articles/10.1186/s40504-014-0020-9 http://genomesunzipped.org/2010/10/why-public-genomics-is-not-a- purely-personal-decision.php#more-1186
  16. 16. Licensing data
  17. 17. Licences • Without a licence it’s unclear how data can be reused • Tells how data can be (re)used and attributed • All Australian data intended for reuse should have a licence • Gives the owner control and credit
  18. 18. Creative commons
  19. 19. Licensing and data NOT FOR DATA  
  20. 20. Data citation
  21. 21. DOIs for data
  22. 22. Resources for medical and health data ands.org.au/working-with-data/sensitive-data ands.org.au/medical Publishing and sharing sensitive data Guide Data sharing considerations for Human Research Ethics Committees Guide De-identification Guide
  23. 23. Senior Research Data Specialist kate.lemay@ands.org.au Twitter @katelemayands Kate LeMay With the exception of third party images or where otherwise indicated, this work is licensed under the Creative Commons 4.0 International Attribution Licence. ANDS is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program. Monash University leads the partnership with the Australian National University and CSIRO.

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