The Most Personal Data There Is: Consumer Genomics, Research Consent, and What Happens to a Sample
By Casey Scott McKay ·
A tube of saliva produces a dataset that identifies its subject permanently, implicates relatives who consented to nothing, and cannot meaningfully be anonymised. This article works through what a consumer genomics company actually holds, why the sample and the sequence are governed by different bodies of law, and what happens when a person asks for their data back. It covers research consent architecture, database licensing to pharmaceutical partners, the law enforcement genealogy question, the discrimination statutes and their gaps, and the reidentification problem that undermines the sector's central reassurance. It closes with the structural fact that makes this field different from every other data business.
IP and Technology > Privacy Data Security | Article | Published 15 October 2023 - Updated 7 July 2026 | Casey Scott McKay - marksy.us
What the company actually holds
A consumer genomics business receives a tube of saliva and returns an ancestry report. Between those two events it comes into possession of four distinct things, each with a different legal character, and the failure to distinguish them is the source of most of the sector's difficulties.
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