Thinking through principles, privacy and ethics for our collections as data
Last updated: Oct 17, 2019
My name is Jack Maness. I’m an Associate Dean at the University of Denver Libraries, and my role in the Collections as Data project here at DU is essentially one of administrative support. Toward that end, I am committed to providing the team what it needs to not only meet its goals during the course of the funded work, but beyond; and doing so in such a way that we contribute to the larger research and learning community interested in analyzing collections as data, and using it to further our understanding of ourselves, one another, and our world.
In our case, the data in the records of the JCRS are all about human beings who once lived, loved, suffered and died in our community. It is, then, incumbent upon us to do this with strict ethics at the forefront of our work. Ethics that protect privacy and yet allow for research. It isn’t simple work, but it has been one of the most enjoyable aspects of the project for me (aside from, of course, working with Kim, Kevin, Alice and the rest of what is a truly wonderful group of colleagues).
When we first submitted the proposal to the Collections as Data group, we more-or-less made a simple observation that these records are not subject to HIPAA or IRB processes, primarily due to the time that has passed since these people left us. And I am so glad they asked us to think it through more and include more about our plans in that respect. Kim and I then embarked on a process of reflection (and in my case, worst-case scenario thinking, which is something I am unfortunately fairly good at), which led to exploring similar project and how they handled the issue.
Kim discovered a fantastic project at the University of California San Francisco, “No More Silence — Opening the Data of the HIV/AIDS Epidemic.” She was able to meet and seek advice from Polina E. Ilieva, Head of Archives and Special Collections at UCSF. They had a very helpful conversation and Polina provided their draft terms of use for our considersation. She also pointed us to the Digital Histories of Eugenic Sterilization: Developing a Multi-Modal Prototype and Best Practices for Sensitive Health Data project by Alexandra Stern.
Kim briefed me on the conversations and I spent the greater part of that evening perusing the AIDS History Project at UCSF. I was humbled and inspired by the collection and the people whose story these documents tell. Courage, community, suffering, compassion and activism are the words that came to mind. Even simple documents, such as the agenda of the Mobilization Against AIDS Board for July 22, 1989, are important in so many respects. Understanding how the movement organized itself, what issues it tackled, what agenda items remained and what were closed over time, and how that work can inform future work in health activism is critical (for example, the opioid epidemic has now claimed more lives than AIDS did in the 1980s, a truly shocking and gut-wrenching fact that is also personal for most of us).
But I also found myself awash in empathy for the people involved in this movement. In this one document we see a group of passionate people spending six hours cloistered probably in a room on Market Street on a Saturday in July dedicating themselves to helping their family and friends face a monstrous disease. Their plight, their ultimate success in demanding the nation pay attention, get the facts, and address a serious public health threat, inspired me. It also brought back so many memories. I was pretty young in 1989, my own family was facing adversity, and I spent a lot of time in San Francisco that summer with a cousin and my brother, wandering the streets, getting to know one of greatest cities on earth and its indominable people. I remembered, too, when another cousin of mine passed from AIDS a few years before, and the anguish on his father’s face at his funeral. And I realized many of the men and women in this meeting that day would just a few months later be faced with another challenge: the Loma Prieta Earthquake. How strong they were, and are.
More discussions at the Collections as Data Team Lead Institute in Philadelphia earlier this year helped me begin coalescing my thoughts and how we might approach these issues on our project. We were exceedingly fortunate to be joined by Sharon Leon at Michigan State, and she led a workshop on the ethical considerations inherent in the work of our cohort. Sharon called our attention to the Colored Convention Project Principles, which I found both poignant and a perfect example of how we might approach our work moving forward. We had already begun forming an Ethics Advisory Board and Sharon further helped us think through what issues to bring to their attention and how to engage them. We came home and did so, and it was the best meeting of the year for me! Comprised of ethicists, historians, librarians, attorneys, physicians, and members of the Jewish community, we talked through the issues over a Kosher lunch and came away agreeing on a terms of use document approach, how to engage the board in the future, and a common set of principles we’d ask users to abide by.
And so, here are our principles, part of our Terms of Use Agreement. They are still in draft:
“I affirm the role of JCRS patients and staff as data creators and will avoid exploiting and/or dehumanizing them by treating them simply as data.
My research will, when possible and appropriate, account for the contexts surrounding the JCRS subjects as data arise. My work will recognize that all data and datasets are shaped by decisions about how histories are recorded, remembered, and valued.
If the nature of my work is such that I am sharing the life stories and/or narratives of individuals in these data, and I can do so with no potential harm to their reputation or that of their ancestors, I will honor them by naming them. If the nature of my work is such that I am exploring large-scale patterns in the dataset, and naming individuals serves no specific research purpose, I will anonymize and/or redact names within the data.
If I am publishing the results of research conducted with these data, I will, if possible and appropriate, include a note of recognition and/or gratitude in my publication. We suggest a version of:
‘This work was made possible in part by the patients, staff, nurses, physicians, and community of the Jewish Consumptives Relief Society (JCRS). The people who lived, worked, and died at the JCRS sought to relieve human suffering. I am grateful to them.’”
And so, I too am grateful to them. This project will facilitate the use of collections that lead to data regarding immigration patterns, ailments of the urban poor, and the history of medical treatments of communicable disease.
But it also about people who lived just a few short miles from where I now live. People who persevered, endured, and prevailed.
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