Institute for Genomic Data Governance Research and policy at the intersection of genomics and data.

Institute for Genomic Data Governance

Research and policy at the intersection of genomics and data.

Latest Articles

The Uniformed Sample: Veterans' Genomes and the Stewardship Obligations of a Federal Biobank
Policy Explainers

The Uniformed Sample: Veterans' Genomes and the Stewardship Obligations of a Federal Biobank

The VA's Million Veteran Program has turned veterans' genomic data into a national research asset. This explainer examines the consent, custody, and data-sharing questions that arise as a federal biobank moves from research toward clinical care, benefits administration, and industry partnership—and proposes a stewardship framework for the next phase.
The Age of Majority Is Not a Data Event: Re-Consenting Pediatric Genomes in the United States
Policy Explainers

The Age of Majority Is Not a Data Event: Re-Consenting Pediatric Genomes in the United States

When a child turns eighteen, parental authority over medical decisions generally ends, but the genomic data created during childhood often remains available under the terms a parent accepted. This policy explainer examines the re-consent gap for pediatric genomic data, the limits of access and deletion rights, and the practical protocols custodians can adopt before a young adult discovers a genome that was never theirs to authorize.
The IEP Is Not a Consent Form: How Genetic Diagnoses Travel Through School Data Systems
Policy Explainers

The IEP Is Not a Consent Form: How Genetic Diagnoses Travel Through School Data Systems

Genetic diagnoses increasingly enter K-12 records through health plans, individualized education programs, and education-technology platforms. This explainer maps how those records move under FERPA and related rules, where parental consent is thinner than it appears, and what districts and vendors should clarify before a diagnosis becomes another data point in a student's file.
When the Grant Ends, the Obligation Doesn't: Closure Protocols for Genomic Research Data
Working Papers

When the Grant Ends, the Obligation Doesn't: Closure Protocols for Genomic Research Data

Federal data-sharing rules are explicit about what happens while an award is active and largely silent about what follows. This working paper maps the decisions institutions face when a study closes, a principal investigator retires, or a consortium dissolves, and proposes a closure protocol that keeps consent terms intact after the funding ends.
Consent Is Not a Substitute for Sovereignty: Tribal Data Governance and the Federal Genome
Policy Explainers

Consent Is Not a Substitute for Sovereignty: Tribal Data Governance and the Federal Genome

Federal genomic policy is built on a grammar of individual permission: the consent form, the data use agreement, the withdrawal request. Tribal governments are pressing a different claim — that a Nation's relationship to its members' genomes is a matter of sovereignty, not paperwork. This explainer traces how tribal IRBs, data repositories, and consultation protocols are reshaping federal practice, and what agencies revising genomic data-sharing rules can learn from them.
The Unclaimed Record: Embryo Genomic Data and the Limits of Fertility Clinic Consent
Policy Explainers

The Unclaimed Record: Embryo Genomic Data and the Limits of Fertility Clinic Consent

Fertility care now produces genomic records about embryos as well as patients, but U.S. law and clinic consent forms rarely say who owns, controls, or may reuse that information. This explainer maps the gaps around research reuse, divorce, death, and clinic closure, and offers a practical governance checklist for clinics and patients.
The First Sample: Consent, Custody, and the Residual Bloodspots of Newborn Screening
Policy Explainers

The First Sample: Consent, Custody, and the Residual Bloodspots of Newborn Screening

Newborn screening is one of the most universal encounters Americans have with genomic data, yet the governance of residual dried blood spots remains a state-by-state patchwork. This explainer maps the consent, research-use, retention, and law-enforcement questions that surround the specimens left after routine screening.
Cousins, Clues, and Custodians: The Governance Debt of Hybrid Genealogy Platforms
Working Papers

Cousins, Clues, and Custodians: The Governance Debt of Hybrid Genealogy Platforms

Genealogy services that fuse documentary family trees with DNA matching have assembled a research instrument neither component could produce alone. This working paper asks what duties such platforms owe to relatives who never consented but are nonetheless identifiable in the data.
The Recruiting Combine Has a New Data Table: Genetic Testing Enters Youth Sports
Policy Explainers

The Recruiting Combine Has a New Data Table: Genetic Testing Enters Youth Sports

Travel leagues and college recruiting pipelines are increasingly inviting young athletes to submit genetic samples promising insight into performance potential. This explainer maps the regulatory gaps that leave minors' genomic data largely unprotected in the athletic context, and outlines what families and governing bodies should do before the practice scales.
Recruited by the Double Helix: How Consumer Genomes Are Quietly Becoming Clinical Trial Currency
Policy Explainers

Recruited by the Double Helix: How Consumer Genomes Are Quietly Becoming Clinical Trial Currency

Pharmaceutical sponsors are increasingly mining consumer genomic databases to identify candidates for clinical trials, often under consent terms volunteers never carefully examined. This explainer maps the recruitment pipeline, the regulatory seams it runs through, and the questions patients should ask before their genome becomes an entry ticket.
Spit, Signatures, and Settlements: Family Law's Quiet Encounter With the Genome
Policy Explainers

Spit, Signatures, and Settlements: Family Law's Quiet Encounter With the Genome

At-home DNA kits were marketed as tools of self-discovery, but they are increasingly appearing as exhibits in divorce and custody proceedings across the United States. This explainer maps how courts, prenuptial drafters, and privacy statutes are colliding over a question family law never anticipated: who owns a genome within a marriage?
Marked Down, Signed Up: The Consent Problems Hidden in a Genetic Testing Sale
Policy Explainers

Marked Down, Signed Up: The Consent Problems Hidden in a Genetic Testing Sale

Flash sales and holiday bundles have become the primary engine of consumer genomics growth in the United States, yet regulators have paid little attention to how promotional pressure shapes the decision to surrender a genome. This explainer maps the gap between marketing-driven enrollment and meaningful informed consent.
The Border Meets the Base Pair: How Immigration Enforcement Is Edging Toward Genomic Data
Policy Explainers

The Border Meets the Base Pair: How Immigration Enforcement Is Edging Toward Genomic Data

Immigration authorities have long relied on fingerprints and iris scans; DNA remains the newest and least governed biometric at the edge of enforcement. This explainer traces the legal authorities, procurement patterns, and court rulings that could carry a saliva sample from a visa file into an immigration courtroom — and maps the gaps where Congress has yet to speak.
When the Genomics Company Fails: A Policy Guide to Bankruptcy Proceedings and the Fate of Stored Genetic Data
Policy Explainers

When the Genomics Company Fails: A Policy Guide to Bankruptcy Proceedings and the Fate of Stored Genetic Data

Corporate insolvency in the consumer genomics sector raises urgent questions about what happens to millions of stored genomes when a company reorganizes or dissolves. This policy explainer examines how US bankruptcy law treats genetic data as an asset, why existing privacy statutes offer limited protection during liquidation, and what reforms could close the gap.
Policy Explainers

Before an Underwriter Ever Reads Your File: Mapping the Data Brokers Between Consumer Genomics and Insurance Pricing

Consumer genomic exports increasingly flow through analytics intermediaries before any human underwriter sees a file. This explainer traces those data pathways and examines the points at which GINA's framework, written for a pre-algorithmic era, loses its grip.
Sequenced in Boston, Analyzed in Singapore: The Quiet Offshoring of American Genomes
Policy Explainers

Sequenced in Boston, Analyzed in Singapore: The Quiet Offshoring of American Genomes

A growing share of American sequencing data now travels through laboratories and cloud infrastructure overseas, where HIPAA and GINA offer no protection. This explainer maps the offshore pipeline and the regulatory gaps it exposes.
Wellness Perks with a Double Helix: What Workers Should Know Before Swabbing at the Office
Policy Explainers

Wellness Perks with a Double Helix: What Workers Should Know Before Swabbing at the Office

Employer-sponsored genetic testing occupies a murky corner of American health law, where GINA's protections meet HIPAA's gaps and state statutes of uneven strength. This explainer maps the landscape and offers practical steps for employees facing a workplace genomics program.
Badges, Passwords, and Base Pairs: Auditing Who Really Holds the Keys to the American Genome
Working Papers

Badges, Passwords, and Base Pairs: Auditing Who Really Holds the Keys to the American Genome

Sequencing centers safeguard some of the most identifiable data in existence, yet access often rests on shared credentials and rotating student staff. This working paper surveys access-control practices at major US facilities and proposes a tiered standard for genomic data custody.
Chain of Custody, Chain of Nucleotides: Tracing a Police Request Through a Consumer DNA Database
Working Papers

Chain of Custody, Chain of Nucleotides: Tracing a Police Request Through a Consumer DNA Database

Since the 2018 arrest of the Golden State Killer, law enforcement access to consumer genetic databases has moved from hypothetical to routine. This working paper reconstructs the procedural pathway of a typical police request — from subpoena to database query to courtroom — and evaluates the transparency practices of the major testing services.
Fifty Rules, One Genome: How State Lines Redraw the Boundaries of Genetic Privacy
Policy Explainers

Fifty Rules, One Genome: How State Lines Redraw the Boundaries of Genetic Privacy

Federal law protects Americans from genetic discrimination in health insurance and employment, but it says little about who may buy, sell, or broker the raw data of heredity. Into that vacuum, state legislatures have constructed fifty divergent regimes — leaving the same genome with different legal protections depending on the mailing address of its owner.