Data Ethics Week: It’s Not Just Data by Billie Joe Rogers

My name is Billie Joe Rogers and I’m an Anishinaabe member of Aamjiwnaang First Nation in Ontario, Canada, and co-owner of Reciprocal Consulting Inc based out of Vancouver, BC. I offered my experiences and views to Informing Change during the creation of the Data Ethics Guidebook and Toolkit, and was invited to further share my thoughts on data ethics here.

Don’t get me wrong, I love a good Excel or SPSS file and analyzing qualitative and quantitative data, but it’s important to realize it’s not just data. By no means do I consider myself a data ethics expert; rather, I strive to simply be a good human being. Among Anishinaabe people, the Seven Grandfather Teachings guide us towards Mino-Bimaadiziwin – the Way of a Good Life. These teachings are my guiding framework for ethics and how I think about and steward stories and feedback shared with me in research and evaluations. It’s quite special that people willingly and openly share not only their evaluative input, but also sit in relationship with me and offer their personal stories and realities that contextualize their feedback. They have given a small piece of themselves to me in this relational exchange.

For Indigenous people and communities, the words ‘research,’ ‘evaluation,’ or ‘data’ don’t always elicit very positive emotions. Research has typically been on, rather than with, Indigenous people, where we have been treated as data sources, subjects, and objects rather than colleagues or better yet, human beings.

There have been several instances in which research has caused harm and distrust through misuse of data and unethical methods. One such example can be seen in the unauthorized use of Nuu-chah-nulth blood. What started as research on rheumatic disease later morphed into blood samples in this research being transported to the UK, shared with other researchers, and used for ancestry research. The Nuu-chah-nulth consented to research to help find a cure for rheumatic diseases, and their blood – treated simply as data – has been used in a variety of genetic studies outside the scope of the consent forms they signed.

Data – no matter the shape or form, whether it’s physical samples, written narratives, or oral stories – are an extension of a person or group(s) of people, and therefore should be treated as you would treat that person or group(s) of people. This means the data you see in an Excel or SPSS file aren’t just numbers, but in fact represents input from those who shared the data, and ought to be treated the same way you would treat the person who gave that input. As stated by Frank Dukepoo, a Hopi geneticist: “To us, any part of ourselves is sacred. Scientists say it’s just DNA. For an Indian, it is not just DNA, it is part of a person, it is sacred, with deep religious significance. It is part of the essence of a person.” Integral to adhering to this is Indigenous data sovereignty and the right for Indigenous Peoples to shape, manage, and access their own data – that is, for Indigenous peoples to self-determine if, how, where, and for how long their stories, samples, thoughts and reflections are used.

Hot Tip

Remember research and evaluation are human endeavours: there are humans who share generously with us as researchers and evaluators, and we are the ones interpreting what was shared with us with our own worldview. It is our responsibility to steward these stories and feedback in a respectful and responsible manner.

Rad Resources

The American Evaluation Association is hosting Data Ethics Week.Would you like to submit an AEA365 Tip? Please send a note of interest to AEA365 is sponsored by the American Evaluation Association and provides a Tip-a-Day by and for evaluators. The views and opinions expressed on the AEA365 blog are solely those of the original authors and other contributors. These views and opinions do not necessarily represent those of the American Evaluation Association, and/or any/all contributors to this site.

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