Count us in.
Most of the world's people are barely present in the data behind modern medicine. Count Us In is the foundation through which the institutions that serve them take their place in discovery, on their own terms.
The next generation of precision medicine will be built on data. Today that data reflects a minority of the world.
Foundation models of human biology learn from whoever has been measured. Most of humanity has barely been measured at all.
The result is medicine that works less well for most people: risk scores that lose accuracy, test results returned as "uncertain", dosing evidence that is thin for many of the patients who now receive the drug.
Representation is a scientific requirement and an ethical one. The Foundation exists so that being counted is something an institution chooses, on its own terms.
GWAS Diversity Monitor, University of Oxford, accessed September 2026. Martin et al., Nature Genetics 2019.
A community of institutions, under one charter.
Count Us In Foundation is an independent non-profit, a Delaware non-stock corporation with its own board. It governs one global programme, run through regional and national Councils. Institutions accede to the charter and deal with the Foundation alone; no commercial party can approve access to their data.
We work with a growing collection of data partners around the world: hospitals and health systems, biobanks, research institutes, ministries of health and national genomics programmes.
Eight principles every Council decision must follow.
They cannot be changed without the unanimous consent of the Global Stewardship Council. Everything else in the charter can adapt.
Data and specimens stay under the control of the region and nation they come from.
The people whose biology makes the programme possible must benefit from it. Nobody takes part only as a source of data.
Each region's scientists lead the science from their data, with co-authorship and co-IP.
Decisions, distributions and access approvals are documented and reported to every contributor.
The Foundation works to get the most for contributors from everything the programme generates.
Built to outlast any single institution or person. Contributors' rights under the charter persist.
Well-characterised cohorts first. Growth on demonstrated benefit. Quality over scale.
Income is reinvested in sequencing, training and infrastructure, so the programme deepens for everyone.
What it means to accede.
Accede to the charter
One agreement, with the Foundation. Your institution joins its regional or national Council with a seat and a vote.
Set your own terms
Within your participants' consent and your own ethics approvals. You hold a veto over any access to your data that no majority can override.
Keep your data home
Analysis runs in your environment or at an approved facility in your region. Where sequencing is needed, the Foundation funds it.
Receive what returns
Royalty-free use of the model trained on your node, co-authorship on the outputs your data contributes to, and a share of distributions.
Participation is more than contributing data.
Your data stays under your institution's control. No access proceeds without your consent.
Co-authorship for the institutions whose data was used. Regional first authorship. Co-IP on scientific outputs.
Deepening a cohort is the first call on programme income at every tier.
Royalty-free use of the model trained on your node, for research, clinical use and training, for as long as you take part.
At least a tenth of distributable income at every tier goes to training, infrastructure and ethics capacity.
Any institution or region may withdraw. Prior consent and authorised uses are respected; no one else's rights are affected.
Authority sits closest to the data.
One Foundation, three tiers of Council. Regional and National Councils decide access, benefit-sharing and ethics in their own jurisdiction. The Global Stewardship Council guards the principles and sets minimum standards.
- Data Access Committees at each tier review every application. No single party can approve access alone.
- Community Advisory Boards in each participating geography, and an independent global ethics committee.
- Reserved matters need unanimity: changing a principle, dissolving the Foundation, moving assets out, or restricting an institution's use of its own data.
- On dissolution, assets pass only to institutions that share the mission. Never to a commercial entity.
Regions and nodes
Within each region, contributors train together in nodes: groups of neighbouring institutions whose populations overlap. What returns to a contributor is the model of its own node, which reflects its neighbours and the migrant populations it serves.
The charter fixes the order.
Income comes from grants, philanthropy, approved data access and a defined share of licensing under the Partnership Agreement. Each Council applies the same order to the income attributed to its tier.
Participation is not a commercial arrangement.
You are not selling your data. You are choosing to make it part of a governed programme, and you define what that means for your institution.
Model development and licensing are carried out by the programme's commercial partner under a written Partnership Agreement approved by the Foundation. That partner holds no programme data, cannot approve access to any institution's data, and recuses itself from any Council vote in which it has an interest. If it changes hands, its obligations transfer, and the Global Stewardship Council may appoint another operator.
Scientific datasets produced by the programme, such as population variant atlases, are published openly. They are not commercial products of the Foundation or of any partner.
The charter and governance schedule are available to prospective contributors on request.
Fund the sequencing that changes the map.
Support goes to the first two priorities in the charter: data generation for cohorts never sequenced at depth, and the capacity for their institutions to lead the science.
- Directed giving is honoured. Funds for a specific region, nation or programme go to that Council and are stewarded under its priorities.
- Every distribution is reported to contributing institutions.
- Repayable advances for sequencing are possible on Council-approved terms, never at the expense of capacity building or distributions.
- It is regenerative. Authorised use of programme models returns income that funds further sequencing, so a grant today keeps a cohort producing for years.
Institutions that hold representation to be non-negotiable.
Data custodians
Hospitals, biobanks, research institutes and ministries of health, keeping full stewardship of their data.
National programmes
Health bodies and genomics initiatives that want the science and the skills to stay in the country.
Funders and philanthropy
Grant-makers and multilateral bodies whose support goes to sequencing and capacity, under a protected floor for both.
Researchers and industry
Those who need findings that hold across populations, and who engage through the Councils, never around them.
If your institution should be counted, start with a conversation.
Exploring participation, contributing a cohort, constituting a national programme, or supporting the mission: no commitment is needed to begin.