Research and policy at the intersection of genomics and data.
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.
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.
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.
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.
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.
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?
As NIH implements its 2024 genomic data-sharing requirements, a wave of working papers and comment letters is pressing for revisions. We summarize five proposals—spanning tribal sovereignty, federated query architectures, and consent infrastructure—and assess what each would mean in practice.
No single federal statute governs who holds your genome once it leaves your body. This plain-language guide untangles HIPAA, GINA, state privacy laws, and consumer contracts—and offers a practical checklist for anyone asked to share their DNA.