On January 27th, 2021 the Dalla Lana School of Public Health (DLSPH) Data Science Interdisciplinary Research Cluster, led by Laura Rosella hosted an event featuring Rinaldo Walcott, moderator Jo-Ann Osei-Twum, and discussants Ruha Benjamin, LLana James and Pat O’Campo. The full talk is posted on the DLSPH YouTube channel and you can reference our event page with bios for everyone involved.
This event used an applied Knowledge Translation (KT) approach from conception to completion, with a focus on fostering a critical epistemological engagement with data science. This included putting careful thought into relationships, context, framing, language and pedagogy.
Event context and resources
Universities globally are increasingly involved with private corporations (for see additional context, see here and here). For example, universities develop, commercialize and implement technology such as artificial intelligence (AI). They also collect, use, and commercialize data, often in partnership with health care and public health. This has particular implications for BlackLife.
Research institutions and researchers are under pressure to collaborate with the private sector. Even when researchers do not explicitly partner with corporations, their data and technology can be used in the context of private sector projects. For example, confidential health information has been traded by Electronic Medical Record companies in Ontario, and shared with police and small businesses in Edmonton. As a result, whether or not there is a formal partnership with the private sector, data and technology generated by academic and non-profit researchers is left vulnerable to uses such as:
- Denying people loans, mortgages and insurance;
- Potentially facilitating immigration detention and deportation;
- Putting individuals and communities at risk of surveillance, over-policing, carding/wrongful arrest, and incarceration;
- Denying medical care;
- Misdiagnosing and/or mistreating patients;
- Commercializing people’s data.
These are just some of the known harms, all of which have particular implications for BlackLife. All these harms all occur without consent from the patient and/or research participant, or from communities.
Opportunities to explore these realities are few and far between. In the context of the university, administrations often develop infrastructure to normalize, facilitate and accelerate public-private partnerships, while uncritically and enthusiastically promoting collaboration with the private sector.
The catalyst for this event was the lack of critical discussion and responsible action in the face of these harms. Researchers, data scientists and bioinformaticians involved in data generation, manipulation and building-out the public health and medical data ecosystem must be accountable for the impact of their work on the everyday lives of individuals and communities.
This event was designed to help both conceptualize and bring about this accountability.
Stay tuned for future events hosted by the Dalla Lana School of Public Health (DLSPH) Data Science Interdisciplinary Research Cluster.