Hello RDA/NISO Privacy Implications of Research Data Sets Interest Group chairs,
To re-introduce myself, I am Sam Grabus, a 2017-2018 Data Share fellow. Thanks again for supporting my proposed project, which focuses on facilitating data sharing through the development of best practices for IRBs regarding data sharing and rights management metadata.
I attended the RDA Data Share orientation up in Troy, and began digging into some background reading to inform next steps. As a reminder, this was my proposed timeline for the project (though this is now a 1-year fellowship):
Progress so far:
Two gain an understanding of what has already been discussed and researched, I did a review of the existing literature regarding data sharing and IRBs. Two articles in particular were directly relevant. The first article discussed the results of a survey from 60 institutions about the handling of biomedical research data. Ambiguous or inconsistent IRB policies and practices regarding data protection makes data sharing challenging. The article is specific to biomedical samples/data, but it remains relevant for any human subject research data, and calls for interoperable policies regarding the secondary use of data. The second article, which is even more relevant, surveys 208 IRB professionals about their positions related to the sharing of genetic data. The survey found that there are inconsistent beliefs about the risks and repercussions involved with the re-identification of research participants. The article calls for regulatory measures or best practices to maintain consistency and avoid duplication of effort. Their recommendation also calls for regional or national IRB consortia to establish best practices, and discusses the need for understanding of researcher data sharing needs.
This is where I fit in:
This last article called for a greater understanding of researcher data sharing needs, and what better place to find out that information than data sharing agreements? For my work with the NSF Northeast Big Data Innovation Hub’s data sharing spoke, I am collecting and parsing attributes from as many data sharing licenses as I can obtain to determine commonalities among these requirements. So my next steps are to collect IRB protocols and find out what exactly they specify about data sharing and rights management metadata (if anything).
Next Steps:
I’m thinking I should do a little more follow-up reading to inform my research design. I know time will go quickly, however, so I need to think about how I might obtain my sample of IRB protocols. Currently, my thought process is to contact IRB officers, but I would be interested in advice that you might have on that, or suggested approaches for the endeavor.
Thank you for your time despite my long-windedness, and I look forward to hearing back from you about any ideas you may have!
Best,
Sam Grabus
Research Assistant, Metadata Research Center
PhD Student
College of Computing & Informatics
Drexel University
3141 Chestnut Street
Philadelphia, PA 19104
Tel: 410.262.3365 | ***@***.***
http://www.pages.drexel.edu/~smg383/