Legal and Ethics - Health & Medical data - Full recording
Channel: Australian Research Data Commons - ARDC
Date: 2017-05-29

The legal framework around privacy in Australia is complex and differs between states. Many Acts regulate the collection, use, disclosure and handling of private data. Principles to follow around sensitive data include the management of personal information in an open and transparent way, only collecting necessary information, and adequate de-identification of data when possible.

There are also many ethical considerations around the management and sharing of sensitive data. Informed consent by research participants is essential for the collection, use and sharing of sensitive data. Storage, access, de-identification and plans for sharing are very important considerations.

1 ) Legal issues and data sharing: 
-- Phoebe Macleod, Legal Counsel and Business Development Manager,  and Amandine Philippart De Foy, Paralegal, for the Murdoch Children’s Research Institute

2 ) Ethics and data sharing: 
-- Dr Conor Brophy MBBS, MD, MBioethics, FRCP, AFRACMA, Chair of Mater Misericordiae Ltd Human Research Ethics Committee, Adjunct Professor, QUT Chairperson UHREC, and Senior Lecturer UQ

Transcript:

Slides: 

Dr Conor Brophy - https://www.slideshare.net/AustralianNationalDataService/ands-health-and-medical-data-webinar-23-may-ethics-legal-issues-and-data-sharing-conor-brophy

Phoebe Macleod and Amandine Philippart De Foy - https://www.slideshare.net/AustralianNationalDataService/ands-health-and-medical-data-webinar-23-may-2017-ethics-legal-issues-and-data-sharing-phoebe-macleod-and-amandine-philippart-de-foy

Individual Webinars: 

Dr Conor Brophy - https://youtu.be/MIaSA-4z2PI
Phoebe Macleod and Amandine Philippart De Foy - https://www.youtube.com/watch?v=pwtlr7BtdQU

Transcript available: https://www.slideshare.net/AustralianNationalDataService/transcript-23-52017health-and-medical-datashortbitesethicslegalissuesanddatasharing/edit?src=slideview