Session Title: Sharing of personal/sensitive research data

Session Organisers: Fiona Nielsen, Marta Teperek

Session Description:


Case study presentations followed by a mini panel discussion.


Sharing research data comes with many ethical and legal issues. Since these issues are often complex and can rarely be solved with one size fits all solutions, they tend not to be proposed as topics of conferences and workshops. However, these are important problems and they need to be comprehensively addressed. During this session we will discuss we will discuss workflow for sharing personal/sensitive data as well as procedures for safeguarding personal/sensitive data shared via repositories.


13:00 - 14:00 - Lunch break: 

  • Gather speakers for briefing of the schedule and intro to (code #8743)

14.00 – 15.30: Session I:

Chair: Marta Teperek

  • 14:00 -  Short intro to part I and schedule & introduction to
  • 14:10 -  Paul Francis: The Data Transparency Lab: Experiences in data sharing
  • 14:25 - Elizabeth A. Hull: Protecting Human Subjects in an Open Data Repository
  • 14:40 - Sebastian Karcher: Rethinking Data Sharing and Human Participant Protection in Social Science Research: Applications from the Qualitative Realm
  • 14:55 - Fiona Nielsen: How to increase accessibility and reuse for clinical and personal genomic data
  • 15:10 - Jared Lyle and Maggie Levenstein: Sharing sensitive social and behavioral science data
  • 15:25 - Thanks to all speakers & ask attendees to add their questions to Slido (5min)  

15:30 - 16:00 Coffee Break

  • Ask questions to speakers on (code #8743)

16:00 - Session II:

Chair: Fiona Nielsen

  • 16:00 - Intro to part II & remind attendees to add questions to
  • 16:05 - Marta Teperek: Starting from the end: what to do when restricted data is released
  • 16:20 - Sara Mannheimer: Putting the “I” in Data: The Ethics of Using Human-Generated Data as a Research Tool
  • 16:35 - Neil Walker: False promises of data anonymity jeopardize data access

16:50 - 17:30 Panel discussion using questions from


This session has 8 papers.


This session has 0 posters.