Digital Estate, Biological Legacy: The Unsettled Law of Genomic Data After Death

A Question Estates Rarely Ask

Estate planning in the United States is a mature discipline. Attorneys routinely account for real property, retirement accounts, digital photographs, and increasingly, social media credentials. What almost no will contemplates is the deceased's genome — the raw SNP file sitting on a consumer testing platform's servers, the relative matches list, the health reports that may reveal predispositions relevant to surviving children.

The omission is understandable. Genetic data occupies an awkward legal position: it is personal to the individual who provided the sample, yet it is also, in a meaningful biological sense, shared with an entire family. When the account holder dies, that tension becomes acute.

What the Terms of Service Actually Say

The first stop for any inquiry into posthumous genetic data is the platform's user agreement, and here the picture is fragmented. Major consumer genomics companies generally permit account holders to designate what happens to their data upon death, though the mechanics differ. Some allow deletion requests to be honored by a personal representative presenting legal documentation — typically letters testamentary or a small-estate affidavit. Others permit users to name a legacy contact with limited account access. Still others are simply silent, leaving administrators to respond to requests on a case-by-case basis.

The critical distinction is between deletion and access. Nearly all platforms will remove a deceased user's data upon verified request. Far fewer will hand raw genetic files to heirs, even those who can demonstrate a familial stake. From the platform's perspective, this caution is prudent: genetic data is re-identifiable in ways few other assets are, and a disclosure to an estate could implicate the privacy of relatives who never consented to anything.

The Rationale for Heir Access

That said, there are legitimate reasons descendants might want access. A surviving child may wish to know whether a parent carried a heritable cancer variant — information with direct medical consequence for the next generation. Genealogists building family histories may seek continuity of research. And in some cases, the deceased themselves expressed a wish that their genetic findings benefit their family.

American law currently offers these heirs little purchase. The Health Insurance Portability and Accountability Act (HIPAA) protects health information for fifty years after death, but consumer genetic testing companies are generally not HIPAA-covered entities, so that shield — and its access rights — frequently does not apply. The Genetic Information Nondiscrimination Act (GINA) restricts how genetic information is used by employers and insurers but says nothing about inheritance or disclosure. The result is a domain governed almost entirely by contract, meaning the platform's terms of service function as de facto inheritance law for DNA.

Law Enforcement and the Deceased

A second, less-discussed question is whether genetic data of a deceased person may be accessed by investigators. Forensic genetic genealogy has become a routine tool in American criminal justice, and most of its successes have relied on public or semi-public databases where users opted in to matching. A deceased individual cannot object to a subpoena, and estates rarely have the incentive or standing to contest demands for genetic records. Absent clear statutory protection, the posthumous genome is, in practical terms, more exposed than the living one — the account holder can no longer log in, monitor, or object.

A Patchwork of State Responses

Several state legislatures have begun to address the gap. California's genetic privacy statute treats genetic data as personal property with protections that survive, in some form, the death of the individual. Other states have imposed consent requirements on genetic data collection that implicitly extend to data brokers and secondary users. But no state has yet produced a comprehensive framework for posthumous genetic data — nothing comparable to the Uniform Fiduciary Access to Digital Assets Act (RUFADAA), which gave executors a clear, if contested, pathway to digital accounts after death.

RUFADAA is, in fact, the most natural template. It struck a balance between fiduciary authority and user intent, allowing individuals to designate online custodians through tools or wills while preserving default restrictions. A genetic analogue — call it a genomic fiduciary provision — would let account holders specify whether their data should be deleted, preserved, or transferred upon death, with platforms obligated to honor those designations.

Practical Guidance for the Present

Until legislatures act, Americans who care about the fate of their genomic data can take several concrete steps:

• Review the platform's terms for posthumous data provisions and legacy contact options, and use them if available.
• Download and secure raw data during life, then decide in your estate documents whether heirs should receive it — remembering that its disclosure affects relatives as well.
• Add a genetic data clause to your will or revocable trust directing your executor to delete, preserve, or transfer account data, and granting explicit authority to interact with the platform.
• Document your intent in a letter of instruction, including account credentials held in a password manager accessible to your fiduciary.
• Discuss family implications with relatives before authorizing any transfer, since your genome is also theirs.

None of these measures is airtight. Contract terms can change, and executors may face resistance. But they establish intent, and intent is precisely what current law lacks.

Toward a Default Rule

The Institute for Genomic Data Governance takes no position on whether deletion or heir access should be the default. What is clear is that silence should not be the default. Roughly thirty million Americans have taken consumer DNA tests; that population ages, and the question of what happens to their data is no longer hypothetical. A modest federal or model-state provision — honoring user designations, setting a sensible default of preservation-with-restrictions, and clarifying law enforcement access — would bring genomic data into the same estate planning framework Americans already rely upon for everything else they leave behind.