Living Kidney Donors: Navigation, Uncertainty, and Ethical Interface

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Part 1. Framing the Problem: Nested Layers

Tactical: Living donation = faster, more humane, but logistically invasive
Informational: Consent must evolve—no more averages as proxies for agency
Strategic: Comparative risk logic reframes ethical justification
Operational: 2-year follow-up ≠ stewardship
Existential: Mortality, ESRD, loss—the stakes are real

“To speak of donation without reverence is to flatten sacrifice.”

[See full framing page →]

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Part 2. Scientific Core: Three Empirical Aims

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2.1 Measuring Risk in the Body

Perioperative mortality, ESRD, long-term mortality
Matched donor vs. nondonor comparisons
Custom phenotype projections (e.g. 40F, 84M)
Wide confidence intervals = visible epistemic humility

“Risk is not a number. It’s a relationship between who you are and what we’ve seen before.”

[Full risk analysis →]

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2.2 Hospitalization as a Sentinel

40+ year dataset: 70% hospitalized post-nephrectomy
Older donors + post-op diabetes/hypertension = higher risk
Frailty conspicuously absent from registries
Hospitalization = the canary in the epistemic coal mine

“Hospitalization isn’t noise—it’s a narrative.”

[Hospitalization deep dive →]

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2.3 The Interface: A Living Consent Tool

App isn’t downstream of science—it is the science
Live risk simulation with dynamic variables
Counterfactual logic built in
Modular, open-source, designed to engage

“This isn’t software. It’s epistemology with an API.”

[Step into the interface →]

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Part 3. Challenge Landscape

Data Access : Fragile pipeline, federal layoffs, manual workaround
Infrastructure: Fragmentation across domains
Automation: Needed to scale Aim 3, but politically fraught
Missingness: Frailty and hospitalization highlight gaps
Demographics: Older donors ≠ edge cases. They are the new norm.

“These aren’t barriers—they are the landscape.”

[Challenges & context →]

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Part 4. April 2 Pivot: From Output to Interface

“I thought the app was the delivery mechanism. It’s not. It’s the thesis itself.”

Static risk estimates? Scaffolding.
Real-time personalization? The paradigm.
The app absorbs Aim 1 and 2, renders them legible to the donor.

“If consent is to mean anything in 2025, it must be navigable, revisable, and real.”

[See interface reframing →]

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Part 5. Closing: An Epistemic Scaffold for the 21st Century

Translational medicine ≠ data transfer. It’s risk made meaningful.
This tool invites co-authorship: patient + clinician + system
Risk isn’t transferred—it’s contextualized

“We don’t need more certainty. We need more clarity.”
“We don’t need cleaner curves. We need shared maps.”

[Final reflection →]

See Also