This weekend, I read two fascinating pieces of work that I’d like to reflect on here. The first is an article by Rao, Segar, Bress et al. (2020) on the association between a risk of cardiovascular illness and West African ancestry. This study is important because the old canard has been that being Black, and specifically having West African genetic ancestry (like I do) is a high-risk factor for hypertension, strokes and other cardiovascular diseases. This study suggests otherwise – in fact, having a higher proportion of West African ancestry was related with a slightly reduced cardiovascular risk compared to other populations.
What gives? Where did the myth come from?
Black folks are dying of heart disease at increased rates. But, to paraphrase a famous put-down: “it’s the racism, stupid!” Experiences of structural racism, and the attendant issues of socioeconomic status that this racism creates, are elevating the risk of hypertension and strokes for Black folks despite the diseases previously being framed as a genetic issue.
This kind of research is vitally important – it helps to dispel key myths about Black folks’ health, and it points clearly to a path forward to improving health outcomes for our communities.
It’s also something that Black folks have been saying for years. I mentioned this in a blog earlier in my OpenThink tenure, but the data collection is only important insofar as it is a reflection of broader community claims and concerns.
This article by Rinaldo Walcott hits at the heart of the issue. I have been a staunch advocate of data collection in a health context for years at this point. I wrote an entire Master’s thesis on the issue. My advocacy and my research have always had one caveat: data collection must be in the service of something greater. I hoped that I would see a meaningful and demonstrable policy shift towards reducing racial health inequities from governments because of the evidence collected, and a shift towards community data governance and oversight. I contended that the data collection itself had a narrative element – that it was a demonstration of investment and intention that would be foundational to rebuild trust between Black communities and governments.
Walcott’s article incisively challenged my thinking. He articulates how data collection has morphed from a helpful accompaniment to policy reform to a replacement for reform in and of itself, bypassing any discussion of community benefit altogether. As he rightfully points out, the linkage between evidence and improved policy-making are tenuous at best (there have been many critiques of the connection between evidence and policy-making which I will not recount here, but this 2017 article by Joshua Newman helps to deconstruct the debate very clearly). Moreover, he highlights and articulates the role of researchers who seek data collection not as a way to improve policy outcomes, but as a way to justify their own roles within organizations or within the academy. These critiques are well-founded, and they have prompted a lot of self-reflection on the role that I play and the roles that others have played in pushing for this shift.
Walcott does not suggest that all attempts at race-based data collection cease. He does, however, recommend that the political demands of Black communities is given the same heft, trust, and resource base as the evidence-gathering efforts that currently exist. He also recommends empowering community researchers and creating community-run research protocols to protect against extractive research processes.
Thankfully, there are some ongoing research projects in Nova Scotia led by esteemed scholars like Dr. OmiSoore Dryden and Dr. Ingrid Waldron that seek to meet the standards that Walcott sets out. His critiques do not, however, prevent me from reflecting on my own research and advocacy practices and interrogating my own motives. Truly prioritizing the needs of the communities that I work with and for means listening, pausing, and reconstituting.
Photo by Hush Naidoo on Unsplash
