The life and death of our research data

At the 2012 iconference, I sat in on a fishbowl about human values and data collection.  Hearing a vibrant discussion about research ethics related to the life of data was actually incredibly timely for me, in that lately I’ve been thinking a lot about the ethics of data gathering.  In particular, I recently came across this research project while perusing a blog on body modification.  Spearheaded by the Centre for Anatomy and Human Identification (CAHID) at the University of Dundee, Scotland, UK, the project intends to collect “images of body modifications to establish a database which may aid in the identification of victims and missing persons, for example in a disaster. By collecting a large number of images of tattoos, piercings and other body modifications, not only can we develop a more uniform way of describing those modifications but also establish how individualistic certain body modifications are within a population, social group or age group.”  Essentially, people with body modification are being asked to submit images of their modifications as well as some personal information in order to generate statistical measures for the prevalence of various body modifications.  In the blog post I read, the researcher emphasizes that “none of the images will be used for policing purposes simply because we don’t have permission to do so.”  Presumably, the researcher felt it was important to emphasize this because one of the partners in the project is Interpol.  Interestingly, in Interpol’s description of the project, there is no explicit mention of the fact that data will not be used to assist law enforcement.
During the conference fishbowl, I raised this project as a case study for thinking about ethical tensions surrounding informed consent, risk/benefit analysis and the preservation of data gathering in social sciences research.  My main question centers on how do we explain to participants the issues of data privacy?  I don’t mean this in a pedantic way, where researchers are instructing hapless laypeople on the complexities of data curation.  I mean, how do we balance a need to gather data from people with a concern for the life of that data?  Can these researchers ensure that the information provided by participants won’t be used for purposes other than identifying bodies after a disaster? If the researchers conclude their involvement with a project, what influence do they have over the database they’ve created and the parties who have access to that database?  IRB forms typically ensure that researchers outline how they will manage the destruction of data and require consent forms to address issues of privacy.  The statement that researchers are prohibited from doing so because they don’t ask for that kind of consent from participants does little to quell my concerns about asking for personal data (moreover, for me, for documentation of bodies) which could then be used in nefarious ways by an international body of policing.
To be fair, I’ve relied on the body modification community to conduct research on secrecy and stigmatized behavior and even with using consent forms and explaining privacy issues I can’t guarantee that all of my participants had thought through every possible contingency of sharing information with me.  Yet to me, there is a qualitative difference between asking participants to share personal experiences with body modification and creating a database of images that is then shared with an agency like Interpol.
My objective isn’t to slam this research project as ethically vacuous.  My objective is to think about this research project as a case that illustrates concerns I have for privacy in the collection of mass information.  Last fall, danah boyd and Kate Crawford wrote a terrific piece on provocations for big data and addressed ethical issues of large data sets.  In addition to their concerns about the ethics of gathering and analyzing “public” data from Facebook or Twitter, boyd and Crawford ask, “Should someone be included as a part of a large aggregate of data? What if someone’s ‘public’ blog post is taken out of context and analyzed in a way that the author never imagined? What does it mean for someone to be spotlighted or to be analyzed without knowing it? Who is responsible for making certain that individuals and communities are not hurt by the research process? What does consent look like?”  These are questions that I would also apply to building repositories of private information that people submit willingly and with consent.
One suggestion that came out of the iconference talk was to think about the metaphors we use to describe data (Is it a mirror?  Is it a window?) and use that as a lens for thinking through some of the issues surrounding the ethics of data collection.  What are the consequences of adhering to a particular set of metaphors about data in terms of how we talk to participants?  These issues also suggest to me that researchers should take a proactive stance with IRBs, suggesting ways of holding ourselves accountable for the privacy and well-being of participants.  I know I’ve been guilty of being a little vague in filling out IRB forms when it came to the benefits my project offers to my participants (I often say something kind of lame like, “It is hoped that participants will benefit from increased understanding of XYZ.”).  For my own work, one thing that comes out of working through some of the issues provoked by the University of Dundee project is a more rigorous consideration about what risks and benefits truly mean for participants in my projects, not only in the process of conducting research, but in the long term of acquiring and sharing information gathered about participants’ lives.

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