ICD-10 and Genetic Conditions Are on Pause

What’s Changing, Why It Matters, and What Public Health Should Do Next

The way the U.S. classifies diseases is quietly undergoing a rethink — and if you work in public health, health policy, rare disease research, or health equity, this matters more than you might realize.

In late 2025, the CDC’s National Center for Health Statistics (NCHS) announced it would pause new ICD-10-CM proposals for genetic conditions while it develops a new, more scalable framework for handling genetic diseases and gene-specific diagnoses. Existing proposals are on hold. New ones won’t be accepted again until December 2026, for consideration at the March 2027 ICD-10 Coordination and Maintenance (C&M) meeting.

At first glance, this may appear to be a technical coding issue. In reality, it sits at the intersection of public health surveillance, rare disease visibility, data equity, reimbursement, and research infrastructure.

Here’s what’s changing and what public health practitioners should be doing now.

What Is the ICD-10-CM Process, Anyway?

The ICD-10-CM (International Classification of Diseases, 10th Revision, Clinical Modification) is the U.S. standard for coding diagnoses. It underpins:

• Public health surveillance
• Health services research
• Quality measurement
• Reimbursement and billing
• Population-level morbidity statistics

Changes to ICD-10-CM are reviewed by the ICD-10 Coordination and Maintenance Committee, co-led by NCHS (diagnosis codes) and CMS (procedure codes). The process is public, iterative, and usually follows a predictable cycle: proposal → public meeting → comment period → implementation.

That predictability is exactly what’s being disrupted for genetic conditions.

Why Genetic Codes Are Being Re-Evaluated

Over the past decade, genetic testing has become faster, cheaper, and more clinically relevant. As a result, NCHS has seen a sharp increase in requests for gene-specific ICD-10 codes—often associated with rare diseases or newly characterized genetic conditions.

Here’s the problem: ICD-10-CM was never designed to scale to thousands of unique gene-level diagnoses.

Adding individual codes for every gene or variant raises serious questions:

• How many codes are too many?
• Should ICD-10 classify genes, conditions, or clinical manifestations?
• How do we avoid creating a system that’s impossible to maintain, interpret, or analyze?

NCHS’s response has been to hit pause and ask a bigger question first:
What organizing principles should guide genetic condition coding in a sustainable way?

The Case For a Pause: Why This Makes Sense

There are legitimate upsides to stepping back before adding more code.

1. Scalability and Sustainability

Without a guiding framework, gene-specific codes could proliferate, overwhelming the classification system and fragmenting data.

2. Data Quality and Comparability

Too much specificity—without consistent use—can harm surveillance by producing sparse, inconsistent data that’s hard to aggregate or compare across systems.

3. Alignment with ICD’s Purpose

ICD is fundamentally a morbidity and mortality classification, not a genomic registry. Clarifying what belongs in ICD versus other data standards is overdue. From this perspective, the pause is less a rejection of genetics and more an attempt to future-proof public health data infrastructure.

The Case Against the Pause: Real-World Consequences

At the same time, the drawbacks are significant — especially for rare disease communities and equity-focused public health work.

1. Rare Diseases Remain Invisible

Many genetic conditions still lack specific ICD-10 codes, forcing clinicians to rely on vague or proxy diagnoses. That makes these populations harder to count, study, and serve.

2. Surveillance and Research Gaps Persist

Without usable codes, genetic conditions often disappear from administrative datasets — limiting epidemiologic research, burden estimates, and policy attention.

3. Equity Implications

Rare and genetic conditions already struggle for recognition and resources. Delaying classification risks reinforcing disparities in who gets counted — and who doesn’t.

This tension between scalability and visibility is the heart of the current debate.

Why This Matters for Public Health (Beyond Coding)

This isn’t just about ICD-10 mechanics. It’s about how public health adapts to precision medicine without losing population-level coherence.

Public health relies on classification systems to:

• Identify emerging needs
• Allocate resources
• Track inequities
• Inform policy decisions

If genetic conditions aren’t well represented in those systems, they effectively fall outside the field of vision — no matter how clinically important they are.

At the same time, if classification systems collapse under their own complexity, everyone loses.

What Happens Next?

According to NCHS:

• New genetic condition proposals are on hold
• Organizing principles will be developed and shared publicly
• Public input will be solicited through ICD-10 Coordination & Maintenance meetings
• Submissions will reopen in December 2026, for the March 2027 meeting

In other words, this is not a closed door — it’s a long hallway with a public comment period in the middle.

What Public Health Professionals Should Do Now

If you work in public health, research, advocacy, or health data, here’s how to engage before decisions are locked in:

1. Pay Attention to C&M Meetings

The ICD-10-CM meetings are public, and this is where the new framework will be discussed. Showing up (or submitting comments) matters.

2. Frame Arguments Around Use, Not Just Rarity

Proposals that emphasize public health relevance, surveillance utility, and system-level impact are more likely to shape the organizing principles than disease-specific appeals alone.

3. Coordinate Across Stakeholders

Clinicians, researchers, patient advocates, and public health agencies should speak with a shared voice about which information truly needs to be captured in ICD-10 — and what belongs elsewhere.

4. Think Beyond “One Code Per Gene.”

Hybrid approaches — grouping conditions by phenotype, clinical impact, or care pathway — may offer a middle ground that preserves visibility without overwhelming the system.

The Bottom Line

The pause on genetic ICD-10-CM proposals isn’t just bureaucratic housekeeping. It’s a signal that public health is grappling with a bigger question:

How do we modernize our data systems for genomic medicine without breaking the foundations of population health?

The answer will shape surveillance, research, and equity for years to come. And right now, that answer is still being written.