Meeting title: Responsible Sharing of Confidential Research Data
Groups: IG Domain Repositories, WG RDA/NISO Privacy Implications of Research Data Sets, IG Ethics and Social Aspects of Data
Please give a brief introduction describing the activities and scope of the group(s)
Data repositories are increasingly faced with the problem of providing access to data with potentially sensitive confidential information. Data may be derived from administrative or commercial sources where obtaining informed consent is impossible. What are the responsibilities of data repositories in these situations? How do we balance the desire of the research community for detailed and informative data with public concerns about privacy? Should data repositories act as gate-keepers to data that has not been properly de-identified? Who is responsible for safeguarding privacy?
Please provide additional links to informative material related to the participating groups i.e. group pages, case statements, working documents etc
Please list the meeting objectives
What are the emerging challenges posed by new sources and forms of confidential data?
What are the legal and ethical responsibilities of data repositories?
What practices and technologies are available to share confidential data?
What procedures and tools can be used to measure disclosure risk?
What is “publicly available data” and why is it different from “open data”?
10-20 minute presentations
- George Alter, University of Michigan, “Sharing Confidential Data: Balancing Access and Risk”
- Mercè Crosas, Harvard University, “The DataTags system: Sharing sensitive data with confidence”
- Margaret Levenstein, University of Michigan, “Researcher Credentialing for Secure Data Access”
- Ruth Duerr, Ronin Institute, “On the Ethical Handling of Local and Indigenous Knowledge Data”
- Candice Lanius, Rensselaer Polytechnic Institute, "Legal and Regulatory Frameworks for Sharing Confidential and Sensitive Data Around the World"
A white paper will be prepared to capture the discussion from this session. Prior to the meeting, a description of the problem space and a review of relevant legal documents and ethical guidelines will be provided to participants. After the meeting, the viewpoints and expertise shared will be condensed and made available for community review and approval.
Audience: Please specify who is your target audience and how they should prepare for the meeting
The primary audience for this session will be data repositories, including both domain and institutional repositories, but the discussion will help all RDA WGs think through concerns about the ethical dimensions of open data to integrate into their adoption and sustainability plans. Individuals with interest in ethical issues in open data are invited to attend.