Race-based COVID-19 data may be used to discriminate against racialized communities
来源:The Conversation
更新:2020-09-16 17:50:29 作者:LLana James
For some, the current demands for race-based data reflect a desire to ensure the experiences of anti-Black discrimination in Canada during the pandemic are not denied or erased. But there are other more powerful forces clamouring for Canada’s race-based data, and the well-being of Black communities is not at the top of their minds.
In April, the Ontario government posted the Digital Health Information Exchange Policy that comes into effect on Oct. 1. The policy makes it easier for someone’s data to move among companies, organizations and institutions, and without someone’s knowledge or consent.
Health data is a hot commodity. Global earnings related to health data management systems — also known as electronic health and electronic medical records (EHRs/EMRs) — are forecast to exceed US$36 billion by 2021.
So why are we being lulled into a false sense of security?
The European Union and the United Kingdom are protecting their citizens’ data, halting the predatory behaviour of tech companies within their jurisdictions. Canada is wide open, comparatively speaking, and as such, Canadian data has become an attractive target for companies seeking to profit from health data.
Benjamin’s scholarship reveals that Black communities are the primary targets and recipients of algorithmic racism. Without laws that protect data from data brokers, we have no way of knowing where or how our data is being used, and by whom.
If the Ontario government continues on the austerity path and delists additional health services, what are the implications — especially for marginalized populations — of adding detailed socio-demographic data to health records?
Right now, the data pouring in about how COVID-19 is affecting Black communities in the United States has not affected the rising death toll. Predictably, in the U.S., race-based data has already been used to undermine Black people, their health and dignity. And in Canada, it’s more of the same: in Nova Scotia, two African Canadian communities were singled out by the province’s chief medical officer of health. The political will to act and protect Black people in the U.S. and in Canada is still missing.
Protecting rights
At minimum, Canadians must demand new data laws, enforceable penalties and the resources to be proactive.
If the purpose of collecting race-based data is to address anti-Black racism, equity or accountability, then the priority must be anti-Black racism.
Do the risks of race-based data outweigh the harms? The stakes are much higher, and more insidious and dangerous than we were led to believe.
Personal information, including health data, must be protected whether it is identifiable, de-identified or anonymized. Laws, regulation, policies and substantive enforceable penalties are the minimum pre-conditions that must be in place before more race-based data is collected and circulated.