The Human Trust

Vivienne L'Ecuyer Ming -

AI is simply incompatible with civil rights—but it doesn’t have to be that way. Just as with a lawyer or a doctor, we must have a right to AI acting solely on our behalf.

The FT just published my op-ed on this subject, an excerpt from my upcoming book, How to Robot-Proof Yourself.

In it, I detail the civil rights argument for data trusts. It's an argument that has inspired me to found my own nonprofit data trust called The Human Trust. But it's not the only argument. Below, I also offer the economic and human development arguments for data trust.

Give it a read and think hard about the world in which you wish to live. It's time for us to explore an entirely new social contract around AI and data, Fiduciary AI.

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The Economic Argument

I hate pitch competitions. The wrong teams win, and too many aspiring entrepreneurs seem to take their stylitics notes from Shark Tank and synchronized swimming. And yet, I’m asked to judge them on a semi-regular basis. The biggest trend I’ve noticed over the last couple of years is every startup—BioTech, EdTech, HRtech, AItech—is pitching their unique and proprietary dataset as defensible IP. Because no one else has access to their magic data, no one else can build the AI driving their company. When I hear this argument I hear, “It doesn’t matter how good our product is because we have a monopoly on the data.”

Datasets as a defensible business strategy is a classic example of a market coordination failure. Rather than the market determining the best possible products in each industry based on the value add of the product (and AI), startups and industry giants alike are hiding their data from one another for fear of getting scooped.

The potential of artificial intelligence (AI) to revolutionize fields like healthcare, education, and scientific research is undeniable. But this frustrating paradox holds us back: the very data needed to fuel these advancements is often locked away, guarded by businesses and academics fearful of losing control and competitive advantage. Businesses and capital markets have conflated the value of data and the value of AI. Rather than producing the highest value AI products, startups, universities, and industry giants alike tout their unique and proprietary datasets. Treating data as defensible IP creates a market coordination failure, a gridlock where everyone loses. Data trusts offer a solution, a framework for innovation and collaboration that takes arguments and fears over data ownership off the table. Best product wins the market.

Coordinating through a data trust, like The Human Trust, researchers studying postpartum and perimenopausal depression have access to a vast, secure pool of patient data, allowing them to develop more effective treatments and diagnostics without violating the privacy rights of the individuals. Similarly, educators can leverage real-time insights from student learning experiences for precision education while respecting each child's differing potential. These scenarios, and countless others, are possible but require a fundamental shift in how we approach data ownership.

The current model, where data is treated as a proprietary asset, creates a fragmented landscape. Businesses hoard data, fearing that sharing it will erode their competitive edge. Academics face similar anxieties, concerned that collaboration will diminish the impact of their research. I remember a professor in grad school who said he’d happily share his data with other researchers once had squeezed out every publication he could imagine. This creates a situation where valuable data sits unused, hindering progress and innovation.

Of course, this assumes that data is being created and captured at all. Because the benefits of AI and technology have been conflated with the value of data, individuals—consumers, patients, citizens—are forced to choose between undergoing medical tests (or just visiting a website) and maintaining their privacy. Given those inflexible choices, few (willingly) share their data, and so they lose the value of the product and we all lose the value of their data.

Data trusts break this gridlock by creating a neutral space for collaboration. They act as independent entities, holding data on behalf of individuals and communities, with clear rules and governance structures for access and use. This allows data to be shared securely and ethically, while ensuring that the benefits of AI are distributed equitably.

The Human Trust, a nonprofit data trust I co-founded, exemplifies this approach. Our mission is to revolutionize human development by fostering collaboration between researchers, educators, and innovators, all while protecting the privacy of our member families. By creating a secure ecosystem of data and computing resources, we aim to unlock the potential of AI for good, driving advancements in healthcare, education, and opportunity for all. Data trusts like ours offer a path forward, a way to move beyond the limitations of individual ownership and unlock the transformative power of collective intelligence.

Weekly Indulgence

We won! That is to say, Dionysus Health won the “Golden Ticket” at Ignite Dallas 2024. #EndPostpartumDepression

But wait! There’s more!

NIH selected Dionysus as a winner in the RADx® Tech for Maternal Health Challenge

Don’t forget that WaPo article on our $6 million grant, and another, and another!

And finally, we just graduated from the One Mind™ for Mental Health Startups!

Stage & Screen

If your company, university, or conference just happen to be in one of the above locations and want the "best keynote I've ever heard" (shockingly spoken by multiple audiences last year)?

<<Please support my work: book me for a keynote or briefing!>>

SciFi, Fantasy, & Me

There have been many science fiction novels about generation ships—Aurora by Kim Stanley Robinson calls into question the entire concept. While I recommend giving Aurora your attention, this week I’m recommending The World Gives Way. It has many of the themes of other generation ship stories, at its heart is a deeply human mystery. It's The Fugitive with indentured servitude in place of a one-armed man, and an ending that has remained with me.

The Human Development Argument

I’ve worked on dozens of “mad science” projects across my career in academia, industry, and philanthropy. These projects have explored nearly every facet of human development—education, workforce, civil rights, neuroscience, health, and more. The biggest (and most underappreciated) problem is “what is the right question to ask,” but next on the list is always, “Where the hell do I get the data?” In any ethical work trying to improve people's lives these questions go hand in hand. And so, beyond the civil rights argument for data trusts, I offer a concrete and personal example of the human development arguments: lives are lost as we squabble over data.

So, I founded The Human Trust. Our mission is to revolutionize human development—health, education, and opportunity—while protecting privacy. Starting with our founding partner, Dionysus Health, we are working to end the corrosive effects of postpartum and perimenopausal depression. From there, we are already working more broadly on maternal healthcare deserts, early childhood development for new families, and a new vision of precision public health.

We are a nonprofit data trust. Our trustees' sole responsibility is the families whose data we hold, their health and their privacy. Just as doctors have a duty to act in the interest of their patients, our trustees' only duty is to act in the interest of our member families. Learn more about our Trustees.

The Human Trust is an ecosystem of protected data and computing resources. We’ve built free tools for our members, including our precision public health and personalized education applications. As members invest data into The Trust, our tools continually enrich its value, creating a unique ecosystem for partnerships with researchers, nonprofits, and even startups who agree that better products are worth more than reselling data. Learn more about our partnerships.

Read the whole article when Robot-Proof hits the shelves!

Vivienne L'Ecuyer Ming

Follow more of my work at
Socos Labs The Human Trust
Dionysus Health Optoceutics
RFK Human Rights GenderCool
Crisis Venture Studios Inclusion Impact Index
Neurotech Collider Hub at UC Berkeley