Links Round-up from the conference marathon

Zar Symposium

Although I couldn’t get away to Chicago, I was able to watch the live stream of the morning sessions (huge thanks to all conference organizers who make this possible). Lawrence Lannom provided a nice overview of where some of the major challenges lie, as well as an update on the Research Data Alliance (RDA). My notes don’t have anything earth shattering, but he was able to clarify for me what RDA is trying accomplish. Frankly, their organizational model was downright confusing. I appreciate their recognition that it is going to take far more than technology to improve data management, access, and reuse.

I definitely want to check out the USGS Data Management site that Viv Hutchinson mentioned in her talk.

 

Bioethics @ the Crossroads

Program

Another very interesting gathering that was conveniently two blocks away from my office. I had to pop in and out due to other commitments, but the discussion was enlightening. What I came away with is that there is a fairly wide gap between the way in which ethicists and lawyers view data sharing and the way in which libraries view it. We need to move our discussion beyond open access” data. The issues for data are far more challenging, nuanced, and are governed by multiple layers of legislation, policy, and codes of ethics/conduct. I’ll be turning my attention to this when I get back from IASSIST, but for now there are some great resources for how data sharing/exchange/reuse is being discussed by the international genomics community.

International code of conduct for genomic and health-related data sharing (Draft #6)

An article by Knoppers et al in Genomic Medicine about the code of conduct.

NIH Genomic Data Sharing Policy (comments recently solicited); this policy may be a pilot for other research communities, according to the webinar linked from the GDS site

A brief search on codes of conduct and ethics in data sharing during the conference yielded a couple of interesting items:

ICPSR webinar: Building Restricted-Use Data Support Services

View recording

Clarifying options and mechanisms for data sharing is on my priority list for late summer and fall as we begin systematic outreach to departments. I’ve begun developing a basic handout, with discipline or research community specific examples and practices, but need to develop guidance language with the IRB and counsel before we’re ready to launch this. The ICPSR webinar helped me get a sense for how others are managing restricted use data sets, but it was a little light on the how-to for explaining the details to faculty. What it did help me to understand are the various policy and tech pieces that need to be in place for successful support. The usual groups are involved – research admin, IRB, IT, counsel – but the terms are fairly specific and the issues better understood than for open data. It appears that several institutions have been doing this for decades, so why is there so little about this in the literature?

More about MLA and IASSIST in a couple of weeks.

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By Heather L. Coates

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