Can data be a force for good?
Why data should be ours to guard — and to give
By Sophie Hoath
Does anyone still have faith in “Big Tech”? A recent survey in the US paints a bleak picture. Over 75 percent of respondents say they are concerned about the power of tech giants like Google, Apple, and Facebook, and most support government action to hold them accountable.
This wave of tech skepticism has its roots in the abuse of user data, thrown into the spotlight by the 2018 Cambridge Analytica scandal and again in Frances Haugen’s Facebook Leaks. In a world where hospital wait-times, credit, and social welfare decisions are increasingly made automatically by algorithms, how our data is acquired, managed, and owned matters tremendously.
Reclaiming ownership can be an important step towards making data work for the good of society. Yet the issue is complex. Changemakers must strike a balance between the individual’s right to data privacy and the social benefits that can be derived from sharing data at scale. This dilemma comes into play in fields from medicine to agriculture.
To understand the promise and pitfalls of using “data for good,” we look to leading social entrepreneurs who bring two different approaches to data ownership: Regi Wahyu in Indonesia and Sharon Terry in the US.
Building a data economy that benefits all
Large tech companies understand the value of data — they’ve built an industry on it. But acknowledging the value of data is different from exploiting the value of data: a distinction that shines through in Ashoka Fellow Regi Wahyu’s work with Indonesian farmers.
Regi created HARA to improve the livelihoods of smallholder farmers who typically live on less than USD 200 per month. The closest banks are typically two to three hours from where they live, which means most don’t have bank accounts, let alone official land titles, making banks unwilling to provide them with loans in the first place.
That leaves smallholder farmers particularly vulnerable to loan sharks, who charge 70 to 80 percent annual interest rates, perpetuating the cycle of poverty. It’s in this context that Regi and his team at HARA looked for ways to make farmers’ assets — rather than their “deficiencies” — visible. The first step was to help gather reliable and trustworthy data about the farmers, their land, production yields, and more, to be recognized as collateral by banks and insurance companies.
Instead of encouraging farmers to keep their data private, Regi created a data cooperative model that compensates farmers who choose to share their information with banks on their own terms, and for their own benefit. According to Regi, the bottom line in every data exchange is and always must be “the informed consent of the farmer.”
Unlike Silicon Valley’s top-down model, HARA’s data economy benefits people at every level — from Indonesian farmers who have increased their income by 36 percent annually on average, to the banks who use this data to gauge the farmers’ credit scores and tailor their lending models accordingly. In this “sharing economy,” Regi says, data is both a private asset and a public resource.
Creating collaborative data hubs
HARA appears to offer the perfect alternative to a system riddled with concerns surrounding data misuse. Yet when it comes to data privacy, there is no one-size-fits-all solution. In the scientific community, for example, even when individuals consent to sharing their data and reap the benefits of doing so, their information can still fall prey to a dangerous trend of data hoarding.
Sharon Terry’s initiative Genetic Alliance started out as a personal quest for answers after her children were diagnosed with a rare genetic disease. With little research at her disposal, she decided to take matters into her own hands. Sharon soon discovered that the pace of research was being slowed down by scientists who hoarded the little data they had.
“Competition is their driving force,” she says. “I saw all these researchers that had collected data, but they would hoard it, and not let another researcher see it. So, I had to think of ways to break through that system and build a new model — one that would encourage accelerated academic collaboration.”
Sharon established the world’s largest biobank for rare genetic diseases including blood, tissue, and DNA samples. Patients stay in control of their data, and researchers and companies can access it (in aggregate only, to protect patient privacy) if they commit to two things: sharing the results with the scientific community and financially compensating the patients who provided the data.
Breaking the Big Tech monopoly
While HARA re-asserts the individual’s right to harness their data to their own advantage, Sharon’s work with Genetic Alliance reminds us that the individual is part of a wider collective. When data can be shared for the good of society, harvesting it can become beneficial to everyone. Recognizing the complexity, we need concrete solutions that factor in both the impulse to reclaim our ownership over our data and the need to share our personal information for the collective good.
Regi and Sharon are not simply pioneering new ownership models, they are showing us how to share benefits (and burdens) in new ways. Just imagine what Big Tech could do if it too shared the belief that our data should work to benefit people, not profits.
This article is the first in our “Tech for Good” series — a collection of articles that examine how we can rewire technology to drive social justice and inclusion through the lens of innovation and changemaking. Learn about what works and what’s next in “Tech & Humanity.”
