This post was authored by intern Aundria Parkman (Aundria.Parkman@nyulangone.org), as part of DCN’s partnership with the National Center for Data Services (NCDS). Each intern has been invited to author a blog post on the annual All Hands Meeting held in June 2022. These internships are funded with Federal funds from the National Library of Medicine (NLM) and the National Institutes of Health (NIH).*
Being an intern with the Data Curation Network has been an overwhelmingly positive experience this summer. The experience is far from the one I imagined at the start of the program. In my mind, I imagined working quietly with data sets using highly technical jargon and being unable to do anything more than hunch over data sets and learn of the intricacies of data curation. I could not have been more wrong. I have learned about data curation but from a perspective where collaboration and working as a team drill into you the meaning of community and finding your niche. I prefer the latter to that of what I imagined.
The 2022 All Hands Meeting did not fall far from this collaborative tree and further ingrained in me that working with data and data curation, in general, is about people as much as it is about data. It had to be the group photo that made my imagined fallacy about data curation fall to pieces. There is something about everyone smiling connected on Zoom that made me realize how important community is when it comes to the DCN. The organization epitomizes the meaning of team.
So, what is it that makes data curation so much about people? This question could not be addressed in one blog entry. However, one part of this multifaceted answer arose when participating in the Human Participant Essentials Training Workshop run by Jen Darragh and Sophia Lafferty-Hess. The take home message was that data curators have a duty when working with human participant data. This duty is relevant because preserving confidentiality and respecting autonomy is relevant when working with people.
It is the duty of curators, as Sophia quoted the H2020 Programme Guidelines on FAIR Data Management in Horizon 2020 to keep data, “As open as possible, as closed as necessary.” This may be a quote that circulates the data curation field often, but it was my first time hearing it. It struck home to me. The full picture of data sharing when people are involved, which is commonly the case, is that people deserve to be considered when their privacy is at risk. From the beginning of the workshop, Jen taught that it is because of the history of data misuse that protecting human participants is even more important when it comes to the data curation and the role curators play when working with researchers publishing this data.
For me, the Workshop highlighted curation techniques for working with human participants. It had sections that taught about informed consent, IRB protocols, and the use of de-identification methods. It all boils down to one word: ethics. This is the bottom line when it comes to how we view and share data when human participants are involved. I learned that there are practices that enable us to make data open without doing unjust harm to the participants who make the data possible. A highlight of the session was a group exercise that emphasized the pitfalls of using vague, unclear consent language and how to recognize it in the documentation.
The initially murky answer to the question I posed on what makes people so important to data curation became clearer after the 2022 All Hands Meeting. Data curation is not just about working with data. It is about working with people; People matter.
To cite this blog post, please use: Parkman, Aundria. (2022). A Network for People. Data Curation Network. Retrieved from the University of Minnesota Digital Conservancy, https://hdl.handle.net/11299/229559.
*This project has been funded with Federal funds from the National Library of Medicine (NLM), National Institutes of Health (NIH), under cooperative agreement number UG4LM01234 with the University of Massachusetts Chan Medical School, Lamar Soutter Library. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.