Roderick Blair was surprised when scientific researchers appeared on his doorstep in the Homewood neighborhood of Pittsburgh, Pennsylvania.
asserted
researchers → surprise → Pittsburgh
Here, on a recent summer day, police cars, an ambulance and a TV reporter crowded into a driveway on the edge of the neighborhood.
asserted
cars → crowd → neighborhood
A helicopter swung overhead.
asserted
helicopter → swing → ?
Saplings peeked over rooflines from gutters, windows were broken, screens tattered, doors boarded up and rippling sidewalks crumbled.
asserted
sidewalks → peek → gutters
Bedraggled chain link fences held back the season’s tall grass.
asserted
fences → hold → grass
Blair’s address had been randomly selected to participate in a research trial on healthy eating.
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address → select → eating
Blair, a 70-year-old retired emergency preparedness worker who spent a career on Capitol Hill, was not enthusiastic.
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who → spend → Hill
“I know about the stubbornness of some researchers where Black people were just a throw-aside, [to] get two of them to say, ‘We studied all black people,’” he said.
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he → know → people
“I choose not to participate in that foolishness.
asserted
I → choose → foolishness
However, as researchers stayed in the community, he was convinced of their sincerity.
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he → stay → sincerity
For more than a decade, he participated in a series of data collection efforts – wearing a sleep monitor and a fitness watch, answering detailed and highly personal survey questions about education, childhood experiences and even sexual abuse.
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he → participate → education
Finally, he was asked to take a cognitive test.
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he → ask → test
“It started off really basic.
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It → start → ?
And they said eventually, ‘We’d like to do cognitive tests on you.’
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We → say → you
I said, ‘That won’t happen.’”
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That → say → ?
It was a “delightful” young test proctor who changed his mind, and he finally took that test too – twice.
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he → change → test
This last assessment was meant to capture cognitive changes – specifically Alzheimer’s disease.
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assessment → mean → changes
But Blair – and the roughly 600 other participants – may never learn the results of his cognitive tests, despite what researchers promised and now have all the data to do so.
uncertain
researchers → learn → data
They won’t know because this grant, like hundreds of others nationally, was terminated by the Trump administration.
asserted
grant → know → administration
“The real loss is that we promised our participants information and feedback based on their two cognitive tests or assessments that they did,” said Tamara Dubowitz, one of the primary investigators on the study, a professor at the University of Pittsburgh and chair of epidemiology, who spoke only in her personal capacity.
asserted
who → promise → capacity
This was the “Phresh” study, a 15-year-long research project that began as an examination of food deserts.
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that → begin → deserts
It evolved into a rich set of data on the life course, wellbeing and eventually cognitive health of two aging, low-income and majority Black neighborhoods just a few miles from a major Alzheimer’s research hub, the University of Pittsburgh.
asserted
It → evolve → Pittsburgh
Now, the funding cuts have the potential to unnecessarily delay diagnosis of Alzheimer’s disease or dementia syndromes in the group – diseases whose treatments rely on early diagnosis.
asserted
treatments → have → diagnosis
Nearly 7 million people in the US live with Alzheimer’s.
asserted
people → live → Alzheimer
Most are white, but Black Americans have nearly double the risk of developing Alzheimer’s dementia, according to the Alzheimer’s Association.
uncertain
Most → have → Association
For decades, this was framed as an “individual risk factor.”
asserted
this → frame → factor
Researchers and theorists have begun to reframe this idea: that these individuals are at risk because of forces far outside their control, such as neighborhood divestment, the weathering effects of discrimination and trauma, all factors scientifically validated through years of research.
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individuals → begin → research
As Blair and other participants shared their lifestories, habits and biometric data, as collected by surveys, wearables monitors and old-fashioned blood-pressure cuffs and scales, the impact of those forces was chronicled as data.
asserted
impact → share → data
There is no single source accounting for race in Alzheimer’s research, but clinical trials and research studies are known to skew toward wealthy and white participants.
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trials → be → participants
In just one clue about the level of disparity, of more than 12,000 brain-imaging studies on Alzheimer’s, only about 700 report race at all.
asserted
700 → image → race
Studies that do report race have more than 87% white participants.
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that → report → participants
As of 2020, census data found about 58% of the US population was white.
asserted
% → find → population
As the Trump administration attempts to remake science according to its own priorities – canceling, freezing or otherwise disrupting more than 5,700 medical research grants at the National Institutes of Health (NIH) – work such as Dubowitz’s has been alternately labeled “DEI” (diversity, equity and inclusion) or unscientific.
uncertain
work → attempt → Dubowitz
Researchers were given 90 days to shut down the study, more than five months earlier than expected and a year earlier than hoped.
asserted
Researchers → give → study
It’s far too little time to conduct cognitive “adjudications,” where a neuropsychologist and geriatric psychiatrist were expected to interpret the results of all 600 participants – experts that the researchers now can’t pay.
asserted
researchers → ’ → that
To Blair, the cancellation of the study – one that the community trusted more each year that researchers stayed – was “clear” retribution.
asserted
researchers → trust → that
“If you don’t agree with me, you’re going to go to the woodshed,” said Blair, later adding, “What has this administration done that has not been a retribution?”
asserted
that → agree → What
Dubowitz’s study has a design unique among Alzheimer’s research.
asserted
study → have → research
The study was first funded in the Obama administration, at the height of concern around obesity and “food deserts” – neighborhoods that lack a nearby grocery store.
asserted
that → fund → store
The study was designed around a natural experiment.
asserted
study → design → experiment
…and 82 more, not listed.
The Aporia
