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Signals from the edge

Who’s building the place to send a lifetime of data?

Published July 2, 2026

In 2025, 23andMe filed for bankruptcy while holding genetic and linked personal data from more than 15 million customers.1 In another case, investigators identified Dennis Rader after obtaining DNA from a medical specimen his daughter had given for an unrelated exam.2 Neither was purposeful data donation. Both show what happens when personal data outlives the reason it was collected, and governance does not keep pace. The foresight question is who is ready to receive, hold and responsibly use a lifetime of data donated to medicine on purpose.

Signals in the present

The future usually appears first as small pockets of change in the present. Foresight helps us see when they begin to connect.

23andMe turned genetic data into a bankruptcy-governance test

In 2025, 23andMe filed for bankruptcy while holding genetic and linked personal data from more than 15 million customers.1 The case raised a basic question consent forms rarely answer: what protections follow genetic data through a sale, merger or institutional collapse? Consumer genetic testing companies generally sit outside HIPAA unless they are acting as covered entities or business associates, which leaves much of this protection to privacy policies, consumer-protection law and bankruptcy-court process. The signal is not that the data was simply unprotected. It is that the protection depended too much on the survival of the company holding it.

Shipping boxes of DNA test kits with an inventory tag attached
Image · genetic data as bankruptcy asset

A medical specimen helped identify a suspect through family DNA

Investigators identified serial killer Dennis Rader after obtaining and testing DNA from a medical specimen his daughter had given years earlier for a routine, unrelated exam.2 The point is not that every medical sample is freely available to law enforcement. The point is that genetic data can implicate relatives who never gave a sample, never entered the database and never had a chance to consent to that use.

An archived medical specimen vial in cold storage
Image · familial DNA match

Many people are willing to share health data after death, but not without conditions

Evidence on posthumous data donation suggests meaningful willingness, especially for public-interest research, but the numbers vary by data type, recipient and study design.3 In one U.S. survey, respondents were willing to donate electronic medical record data after death at 67%, prescription history at 63%, genetic data at 54% and fitness-tracker data at 53%.4 The signal is not blanket generosity. It is conditional willingness that needs trustworthy infrastructure.

Two identical consent forms lit in contrasting warm and cool light
Image · posthumous willingness

Digital-afterlife projects already ask people to archive a life

Terasem’s “mindfile” model and related digital-afterlife projects ask people to collect personal records, writings, photos, memories and behavioral traces to support a posthumous digital self or future mind-clone concept.5 That is not medical research infrastructure. But it shows that the act of intentionally gathering a life’s worth of data is no longer a purely speculative idea. The harder question is whether a trusted medical version can be built without importing the assumptions of immortality startups and grief-tech products.

An old photograph and a small USB drive resting on a server rack shelf
Image · digital afterlife infrastructure

Signal vs. noise

The signal is not that people want to hand over everything after death. The signal is that genetic and health data already outlive the original collection context, while law, consent and stewardship lag behind. These claims sound similar but deserve different levels of trust.

Signal

Willingness depends heavily on who receives the data

In one German survey, most people who supported a data-donation model were willing to allow use by universities and public research institutions, while willingness dropped sharply for commercial users.6 People are not simply for or against donation. They make distinctions about stewardship, purpose and trust.

Signal

Public trust can force institutions to reverse course

After Texas families challenged the retention and secondary research use of newborn blood spots without explicit parental permission, the state agreed to destroy roughly 5.3 million stored samples.7 That was a remedy after controversy, not proof the system worked well. It shows that weak consent can eventually become an institutional liability.

Noise

“Genetic privacy law protects the person who donated”

It doesn’t, not fully. The same kind of DNA sample that identified Dennis Rader shows genetic data implicates relatives who never consented at all.2

Noise

“If it is health-related data, HIPAA must cover it”

HIPAA does not automatically cover consumer genomics, wearable or wellness companies. It applies to covered entities and business associates, which means health-adjacent data can sit outside the healthcare privacy regime people assume protects it.8 23andMe’s bankruptcy is a stress test of that gap, not a strange exception.1

Noise

“De-identification solves the problem”

Genetic data is unusually hard to treat as purely individual or fully anonymous. It can reveal information about relatives, ancestry and inherited risk, even when the person directly tested gave permission. Posthumous donation infrastructure has to account for family privacy, not just donor privacy.

What would make this real

As of July 2026

Posthumous data use already exists in fragments: biobanks that may retain data after death, consumer platforms whose assets can survive the company, forensic uses that reach relatives and digital-afterlife projects that ask people to archive themselves. The question is what would have to change before a leader should treat a full lifetime of intentionally donated data as something responsible infrastructure could actually receive.

WatchpointWhat would change the decisionCurrent status
Postmortem consent becomes standard at intakeConsent forms explicitly ask, at enrollment, whether and how data may be used after death — not left unaddressed as it usually is now.9Not yetMost biobank consent forms still don’t mention it.
A settled legal standard for company failureGenetic and health data rights remain enforceable through merger, acquisition, shutdown or bankruptcy, rather than depending primarily on privacy policies and asset-sale process.10Not yet23andMe made the gap visible; the standard is still unsettled.
HIPAA-equivalent coverage for health-adjacent dataConsumer genetics, wearable and wellness companies face health-data-specific protections when they collect information people reasonably experience as medical or biological.8Not yetMany important data holders still sit outside HIPAA unless they are covered entities or business associates.
A working model for relatives’ privacyGenetic findings that implicate family members get their own consent and disclosure framework, separate from the original donor’s.11EarlyProposed in the literature; not yet standard practice.
Trust-tiered stewardship becomes standard framingResearch and public-interest use are treated differently from commercial use by default, matching what the trust data already shows people want.6EmergingThe preference is well documented; the default isn’t built yet.
Real voluntary lifetime-donation programs existPeople can actively donate a lifetime of data on purpose, not just have existing biobank data continue by default after they die.3Not yetWillingness is documented; the program to act on it isn’t.

How to build readiness

1Build postmortem consent into initial intake

Not as an afterthought years later. Ask, at enrollment, whether and how data may be used after death — the point in the process where nearly every current system stays silent.

2Separate research stewardship from commercial stewardship

The trust gap between the two is large and well documented. Blurring them — even unintentionally — costs the willingness that public-interest research actually has.

3Plan for institutional failure before collecting a single record

Bankruptcy, acquisition and shutdown all need an answer in advance, not an improvised one after the fact. The 23andMe case shows how quickly genetic data can become a governance problem when institutional continuity breaks.

4Design for relatives, not just the individual donor

Genetic data implicates people who never consented to anything. A consent model that only accounts for the donor is already incomplete on day one.

The futurist’s take

The infrastructure already exists.
It’s just not built for what you’d want it for.

Fragments of receiving infrastructure already exist for a lifetime of personal data, but they were built for other purposes: commercial platforms, bankruptcy estates, forensic investigations and digital-afterlife projects. None of those is the same as careful, consensual medical research.

The organizations that get this right will build for two deaths at once: the donor’s and the institution’s. A lifetime data program cannot be trusted if its consent model only works while the organization holding the data remains healthy.

From evidence to artifact

See how we used disciplined imagination to turn weak signals into a tangible artifact from the future.

End-of-Life Legacy Kit — a speculative posthumous data donation consent and end-of-life biometric signal kit. Explore an artifact from this future ↗

References

  1. Gerke, Jacoby and Cohen (2025). 23andMe’s bankruptcy raises concerns about privacy in the era of big data. doi:10.1136/bmj.r1071
  2. Brown, Duensing and Wong (2024). Forensic genetics in the shadows. doi:10.1093/jlb/lsae028
  3. Kucharska, Ali and Moriarty (2026). Exploring perspectives of interest-holders on the use of health and genomic data from deceased participants in research. doi:10.1002/jgc4.70186
  4. Hendricks-Sturrup and Lu (2024). A survey of individuals’ willingness to share real-world data postmortem with researchers. doi:10.1017/cts.2024.652
  5. Hurtado Hurtado (2023). Exploited in immortality: techno-capitalism and immortality imaginaries in the twenty-first century. doi:10.1080/13576275.2023.2266373
  6. Richter et al. (2020). Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany. doi:10.1038/s41431-020-00735-3
  7. Budowle and Sajantila (2023). Revisiting informed consent in forensic genomics in light of current technologies and the times. doi:10.1007/s00414-023-02947-w
  8. Clayton et al. (2019). The law of genetic privacy: applications, implications, and limitations. doi:10.1093/jlb/lsz007
  9. Bak et al. (2019). Stakeholders’ perspectives on the post-mortem use of genetic and health-related data for research. doi:10.1038/s41431-019-0503-5
  10. Darnes (2025). Shifting ownership, shifting protections: Patient privacy and genetic data ownership in the era of mergers and acquisitions. doi:10.1002/jgc4.70101
  11. de Miguel Beriain, Duardo-Sánchez and Castillo Parrilla (2021). What Can We Do with the Data of Deceased People? A Normative Proposal. doi:10.54648/erpl2021041
Additional references
  1. Harbinja (2019). Posthumous Medical Data Donation: The Case for a Legal Framework. doi:10.1007/978-3-030-04363-6_6
  2. Harbinja and Pearce (2020). Your data will never die, but you will: A comparative analysis of US and UK post-mortem data donation frameworks. doi:10.1016/j.clsr.2020.105403
  3. Krutzinna, Taddeo and Floridi (2018). Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data. doi:10.1007/s11948-018-0067-8
  4. Fellmann et al. (2019). ESHG PPPC Comments on postmortem use of genetic data for research purposes. doi:10.1038/s41431-019-0525-z
  5. Richter et al. (2021). Secondary research use of personal medical data: patient attitudes towards data donation. doi:10.1186/s12910-021-00728-x
  6. Seltzer et al. (2019). Patients’ willingness to share digital health and non-health data for research. doi:10.1186/s12911-019-0886-9
  7. Bak and Willems (2022). Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research. doi:10.1007/s11948-022-00387-0
  8. Hurtado Hurtado (2021). Towards a postmortal society of virtualised ancestors? The Virtual Deceased Person and the preservation of the social bond. doi:10.1080/13576275.2021.1878349

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