Systemic Altruism
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Global healthPreliminary editorial review

Open Humans Foundation

The Open Humans Foundation operates Open Humans, a platform for personal-data access, participant research and community projects. Shared software and research infrastructure may reduce the cost of building separate systems for each study.

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Systemic Altruism practice potential: 68–78/100
90% of weighted axes reviewed. A mechanism hypothesis, not proven effectiveness or a donation recommendation.

Who this work enables

Tools & support for charities: A reusable website, personal-data interfaces and community research resources can help public-interest researchers avoid rebuilding participant infrastructure for every project.

Open-source evidence · license checked

  • Open Humans website — MIT license file. Organization’s role: steward.
    The linked foundation platform and website repository have an inspected MIT license. Not archived on 27 October 2026; latest push 21 February 2025. This is code evidence only, excluding participant data, content, dependencies, hosting, security and a promise of current maintenance. License-file snapshot: 54c476a33c4cb88bb8f64deb34be6344b36140b0.

License checked 2026-10-27. This is not a security audit, proof of current support or effectiveness, or a promise of free hosting. A sponsor or steward is not necessarily the sole developer. Unchecked profiles are not evidence of closed code. No extra score points are added.

Humanity’s Checklist source match

Coordination · Gatekeepers — editorial, partial alignment.

Shared research infrastructure and participant access can reduce institutional data barriers and coordinate studies. This does not establish effective consent, representative participation or community control.

Explicit checklist adoption: not verified. A mechanism match is not an affiliation, endorsement, evidence of effectiveness or a scoring bonus. Read the practice.

Focus classification: 2026-10-27. Based on the organization’s dated official sources below; earlier axis-review dates are unchanged.

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The proposed pathway

Provide shared participant-controlled infrastructure for personal-data research

Six dimensions, with rationale

Structural depth

3 / 4

A common participant-data platform changes how research projects can organize access and collaboration, although it does not by itself reform healthcare incentives.

Institutional reach

3 / 4

Reusable infrastructure can serve multiple studies and participant communities; historical member counts are not evidence of representative reach or health outcomes.

Durability

2 / 4

MIT-licensed software can remain available if a project ends, but hosting, privacy safeguards, integrations and data stewardship require continuing work.

Scalability

4 / 4

Shared code and project interfaces can support reuse across studies, while consent, security and technical integration make expansion neither automatic nor costless.

Funding additionality

Unreviewed

Unknown: an accessible platform and reusable repository do not establish a current funding gap, maintenance budget or the counterfactual effect of additional donations.

Community agency

Unreviewed

Unknown: the about page describes community-elected board seats, but actual participant decision rights, withdrawal limits and accountability have not been audited.

Evidence and selection

Primary-source programme and identity documentation; no independent impact validation in this review

Illustrative inclusion to examine this mechanism. Inclusion is not an external recommendation or a verified comparative ranking.

A testable next question

For a defined group of community research projects, does shared Open Humans infrastructure reduce secure setup costs and increase participant-informed research completion without increasing unwanted disclosure or loss of control?

Review confidence: Low–medium for the documented mechanism; low for causal effectiveness and donation comparisons. Open Humans Foundation’s operation and stewardship of the Open Humans platform, not every partner study, participant dataset or another charity under a separate project name.

What remains uncertain

The US 501(c)(3) Open Humans Foundation is the named operator; Open Humans is its project, not another independent charity counted separately. The website repository was not archived when checked, but its latest push was 21 February 2025; this is not a finding of current support or security. Its README lists older development dependencies. MIT applies to the checked code, not sensitive health/genomic data, participant content, third-party imports or service terms. Publishing personal data may have irreversible consequences; consent and re-identification risks were not clinically or technically audited.

Sources to inspect

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Axis review: 2026-10-27 · weighting method v0.2 (2026-10-26) · Method, conflicts and coverage