Decompiling Oppression #130
Sam McVeety
This week, I wanted to write about some alarming trends in data (non)collection, focusing on the area of reproductive health and birth-related mortality. These mirror larger trends in the space of data gathering and curation, with growing uncertainty around the future of datasets (h/t Prem) which impact world-changing decisions. As someone who works on tools to analyze data, I find these trends particularly worrisome. Many of the tools I work on are built on the premise of having correct data about a problem (or seek to enable the user to move in that direction), which stands in stark contrast to efforts to halt or distort data collection.
By way of background, states have MMRCs (maternal mortality review committees), which are panels of experts who are tasked with providing recommendations towards reducing future deaths. As you might expect, these committees have become politically charged in the wake of Dobbs and subsequent state-level restrictions on reproductive care. In Idaho (with one of the most restrictive laws in the country), the state disbanded its committee in 2023.
Other states have not gone as far as disbanding their committees, but have undermined their work in other ways. Georgia dismissed its entire committee, after a report was published on preventable deaths that were linked to its new restrictive laws. Although the state cited concerns about privacy and confidentiality, it's hard not to read this as an attempt to deny the very obvious linkage between preventable deaths and the state's abortion laws.
Still other states blame a lack of resources for neglecting this work. The Texas committee decided to simply skip over the data from 2022 to 2024, in the name of efficiency and keeping a manageable backlog of cases. Crucially, these are the years covering the immediate effects of overturning Roe, demonstrating a notable incuriosity about the effects of that ruling.
This is not to say that resources are never a problem. Over the past year, a controversy unfolded over nationwide mortality data from the CDC, leading to a handful of news cycles about whether it could be trusted. Digging into the reality of the situation, the change at the root of this was the inclusion of a checkbox around pregnancy-related deaths, starting 20 years ago. Sometimes this box was erroneously checked; the solution is to have more rigorous data checking.
Still, a fair amount of damage was done. Arguments over the reliability of the CDC data obscured the still very real (and undisputed) racial disparities in maternal mortality, and muddied the public perception of the linkage between Dobbs and pregnancy-related deaths. This is doubly important when the very idea of fact-checking is under attack; it's a lot easier to vilify fact-checking if you undermine the robustness of the processes generating those facts.
Lest we gloss over it, the point is not to say that MMRCs are perfect. Like other medical institutions, they can perpetuate systemic racism through their membership and operation. The nomenclature itself assumes a fixed notion of gender, erasing some trans parents. More broadly, these committees all exist in the context of disproportionate surveillance of marginalized communities. The same committee that might highlight the existence of a preventable death might also pathologize a parent for their substance use.
All of this highlights the need to build community-based data collection capabilities, where data gathering happens for the benefit of and under the control of the community. We've talked previously about Indigenous Data Sovereignty (IDSov) practices, and indeed, there are efforts to establish MMRCs run by tribal nations. Other groups have encouraged similar efforts in the past, such as Queer the Census. With an uncertain future for many state and federal data projects, we will need a variety of approaches, accountable to the people they serve, to preserve and evolve information that is crucial to understanding the reality we share.
Here are this week's invitations:
Personal: Where can you be confident that your identity or experience will be reflected in data about society? Where will it be absent?
Communal: How can we create safeguards around data, where it is used to identify and remedy harms, rather than exacerbate them?
Solidarity: Support Surge Reproductive Justice and their work to end reproductive oppression for all people.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
FAQ
Can I share this newsletter with non-Googlers? Yes! Feel free to forward this note externally; it does not contain confidential information.
Is this an official Google newsletter? Nope. The views expressed in this newsletter are not the official position of Google, and we are not affiliated with any particular ERG.
I am leaving Google or transferring to another bet. Can I still receive this newsletter? Yes! You can join the external list here.