Research and policy at the intersection of genomics and data.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
In the United States, the institutions that hold our genomic data frequently write, enforce, and evaluate their own compliance rules. This working paper examines the structural conflict at the heart of that arrangement and proposes an independent, credentialed genomic data auditing profession as a remedy.
The terms of service accompanying popular ancestry and health DNA kits contain provisions that would raise eyebrows in any constitutional law seminar — from unilateral policy changes to open-ended research reconsent. This explainer walks through five of the most consequential clauses and what consumers should reasonably expect instead.
Hospitals and biobanks are increasingly licensing genomic datasets to AI developers under agreements that existing oversight frameworks were never designed to address. This working paper examines the accountability vacuum that emerges when a model, rather than a database, becomes the custodian of genetic insight.
A single relative's decision to upload their DNA to a consumer genealogy service can expose medical and identity information about relatives who never agreed to anything. This explainer surveys the fragmented state-level response and makes the case for a kin-aware consent framework in federal policy.
This working paper reviews five incidents involving genetic databases — from insider misuse to law enforcement searches — and the policy responses each provoked. It concludes with a threshold analysis: what would the next incident have to involve before Congress moves on a federal genomic privacy statute?
When a consumer dies, their genetic data does not simply vanish — but who may lawfully access it remains remarkably unclear. This explainer maps the terms-of-service landscape, the estate planning gap, and the state laws beginning to fill the void.