Those of us with a basic working knowledge of research methods probably remember the Tuskegee Study, in which 399 Black men were unknowingly withheld medical treatment in order to study the effects of syphilis. The study, done by the U.S. Public Health Service and Tuskegee Institute, lasted 40 years. Even after penicillin became a widely used and effective treatment for syphilis, the subjects were never treated, never informed about the extent of the study, and never offered the option of quitting. The study finally ended in 1972, after public outcry and an official declaration that it was “ethically unjustifiable.” We remember the Tuskegee Study because it’s an alarming reminder of the ways that data has historically been unjustly extracted from marginalized communities who were seen as expendable. But do we remember that the Tuskegee Study was initiated as a justification for funding treatment programs for African Americans? It wasn’t the motivation behind the study that made it unethical; it was the exclusionary way that information was concealed from the people involved. It’s comforting to think about unethical research as an embarrassing artifact of a bygone era. It’s tougher to think about projects like the Tuskegee Study as being engendered by well-intentioned professionals who only wanted to help.
To situate myself in this narrative: I, too, am a well-intentioned professional who only wants to help. In my work at the UNC Asheville Center for Diversity Education I use data to evaluate the impacts of our educational programming. I am also a member of the 2016-17 Tzedek Social Justice Fellowship cohort, where I receive a wide range of trainings and workshops that inform my sense of justice and equity. I consider myself both an evaluator and an advocate, and am constantly considering the ways that these identities support each other. When dealing with data, as with life in general, I try to ask myself, “Who is benefitting?” I don’t have all the answers, or many answers at all. I enrolled in Evaluate for Change’s course on Data Visualization to learn more.
As a medium of information, visual data is great because it’s accessible. A lot of it is open source and therefore widely available on the internet. Some data visualization projects can have major political impact, for that reason. The Center for Spatial Research uses visual data to map cities worldwide. One of their biggest projects is Conflict Urbanism Aleppo, a data mapping project that uses high resolution satellite imagery to show the urban damage and destruction of the Syrian war. On a local level, visual data has been critical for the growth of the racial and trans justice movements. Furthermore, visual data is often much easier to understand, making it increasingly accessible to non-academic audiences. So, who is benefitting from visual data? Of course, the answer is endlessly complex, and leads to just as many new questions. Who collected this data? Who did they consult? Whose privacy was prioritized? Who is using the data? One thing, I think, is certain. Visual data is informing more people than ever before. To me, that’s pretty revolutionary.
About the Author
Hannah James lives in Asheville, North Carolina. She is currently the Tzedek Social Justice Fellow at the UNC Asheville Center for Diversity Education and an organizer for Girls Rock Asheville. Hannah graduated with distinctions as a University Research Scholar from UNC Asheville in 2016, where she studied sociology and economics with a personal focus on social research. Hannah is passionate about using education, advocacy, and mixed research methodologies to dismantle systems of oppression.