jonny,
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These two projects share a common design pattern: create authoritative schemas for a given domain, create a string of platforms to collect data under that schema, ingest and mine as much data as possible, provide access through some limited platform, etc. All very normal! This formulation is based on a very particular arrangement of power and agency, however, where like much of the rest of platform web, some higher "developer" priesthood class designs systems for the rest of us to use. The utopian framing of universal platforms paradoxically strongly limit their use, being capable of only what the platform architects are able to imagine. The two agencies both innovate new funding mechanisms to operate these projects as "public-private" partnerships that further dooms them to inevitable capture when the grant money runs out.

This is where the story starts to merge with the story of "AI." Since the dawn of the semantic web, there was a tension between vernacular expression and making things smoothly computable by autonomous "agents." That is a complicated history in its own right, but after >20 years todays "AI" technologies are starting to resemble the dreams of the latter kind of semantic web head.

The projects are both oriented towards creating knowledge graphs that power algorithmic, often natural language query interfaces. The NIH's biomedical translator project is one example: autonomous reasoning agents compute over data from text mining and other curated platforms to yield "serendipitous" emergent information from the graph. The harms of such an algorithmic health system are immediately clear, and have been richly problematized previously. The Translator's prototypes are happy to perform algorithmic conversion therapy, as the many places where violence is encoded in biomedical information systems is laundered into neatly-digestible recommendations.

/5

If the graph encodes being transgender as a disease, it is not farfetched to imagine the ranking system attempting to “cure” it. A seemingly pre-release version of the translator’s query engine, ARAX, does just that: in a query for entities with a biolink:treats link to gender dysphoria, it ranks the standard therapeutics [105, 106] Testosterone and Estradiol 6th and 10th of 11, respectively — behind a recommendation for Lithium (4th) and Pimozide (5th) due to an automated text scrape of two conversion therapy papers [footnote 29]. Queries to ARAX for treatments for gender identity disorder helpfully yielded “zinc” and “water,” offering a paper from the translator group that describes automated drug recommendation as the only provenance [107]. A query for treatments for DOID:1233 “transvestism” was predictably troubling, again prescribing conversion therapy from automated scrapes of outdated and harmful research. The ROBOKOP query engine behaved similarly, answering a query for genes associated with gender dysphoria with exclusively trivial or incorrect responses30. [footnote 29]: as well as a recommendation for “date allergenic extract” from a misinterpretation of “to date” in the abstract of a paper that reads “Cross-sex hormonal treatment (CHT) used for gender dysphoria (GD) could by itself affect well-being without the use of genital surgery; however, to date, there is a paucity of studies investigating the effects of CHT alone”
It is critically important to understand that with an algorithmic, graph-based precision medicine system like this harm can occur even without intended malice. The power of the graph model for precision medicine is precisely its ability to make use of the extended structure of the graph31. The “value added” by the personalized biomedical graph is being able to incorporate the patient’s personal information like genetics, environment, and comorbidities into diagnosis and treatment. So, harmful information embedded within a graph — like transness being a disease in search of a cure — means the system either a) incorporates that harm into its outputs for seemingly unrelated queries or b) doesn’t work. This simultaneously explodes and obscures the risk surface for medically marginalized people: the violence historically encoded in mainstream medical practices and ontologies (eg. [104, 109], among many), incorrectly encoded information like that from automated text mining, explicitly adversarial information injected into the graph through some crowdsourcing portal like this one [110], and so on all presented as an ostensibly “neutral” informatics platform. Each of these sources of harm could influence both medical care and biomedical research in ways that even a well-meaning clinician might not be able to recognize.
The risk of harm is again multiplied by the potential for harmful outputs of a biomedical knowledge graph system to trickle through medical practice and re-enter as training data. The Consortium also describes the potential for ranking algorithms to be continuously updated based on usage or results in research or clinical practice[footnote 32] [87]. Existing harm in medical practice, amplified by any induced by the Translator system, could then be re-encoded as implicit medical consensus in an opaque recommendation algorithm. There is, of course, no unique “loss function” to evaluate health. One belief system’s vision of health is demonic pathology in another. Say an insurance company uses the clinical recommendations of some algorithm built off the Translator’s graph to evaluate its coverage of medical procedures. This gives them license to lower their bottom line under cover of some seemingly objective but fundamentally unaccountable algorithm. There is no need for speculation: Cigna already does this [111]. Could a collection of anti-abortion clinics giving one star to abortion in every case meaningfully influence whether abortion is prescribed or covered? Why not? Who moderates the graph? [footnote 32]: “The Reasoners then return ranked and scored potential translations with provenance and supporting evidence. The user is then able to evaluate the translations and supporting evidence and provide feedback to the Reasoners, thus promoting continuous improvement..."

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