Marginalized and underserved communities have not traditionally had access to data resources that could benefit them. As such, they often miss out on benefits such as tailored medical care, sustainable resource use and culture and language preservation. Funders who are willing to take an active role in how their contributions are allocated can influence these communities access to and use of data repositories.

That was the topline conclusion of The Council for a Fair Data Future, a consortium of academics, civil society stakeholders, policymakers and technologists brought together under the umbrella of the Aspen Institute, a Washington, D.C.-based organization thinktank. During a seven-month period, 30 individuals met online and eventually in person to understand the issues and opportunities surrounding data use and move the collected data field toward a future in which data is used for the benefit of individuals and communities, as opposed to just private entities.

The issues examined by the council went beyond opportunities. In some cases, members took ethical concerns and histories of population exploitation under consideration. For instance, while heart disease is the leading cause of death within Black communities in the United States, given the historical abuses of these communities by medical researchers (the Tuskegee syphilis experiments and the non-consensual use of Henrietta Lacks’ cervical cancer cells are only two such examples), the question of whether medical data from the Black community should be widely available is significant.

The council also considered regulatory and policy concerns, such as the need to advance research that promotes social good weighed against data protection laws such as the European Union’s General Data Protection Regulations or California’s Consumer Privacy Act. “While progress continues on the data privacy front, there has been a much slower move towards opening data stores, which hold infinite possibilities to benefit the collective good from advancing research fields to environmental protection to increasing the success rate of social programs,” the authors of Building a Fair Data Future, a report based off the council’s findings, wrote.

“Philanthropy has an opportunity to lead toward a more fair data future by breaking through the noise being created around the advancement of generative AI [artificial intelligence] and elevating issues such as community involvement, enforcement mechanisms, and corporate behavior while also pushing the conversation forward about what the possible data opportunities of the future might be. In the process, ethical, transparent, and community-focused processes for collection, analysis, sharing and use has become an afterthought at best, and an intentional omission at worst,” report authors continued. “Funders can lead by example and establish new norms and higher expectations within their own organizations, with the organizations they fund and engage with, and in the subject areas and peers they influence.”

Within their recommendations for promoting a fairer data future, the report authors suggested:

* Investing in data infrastructure, particularly systems directed toward community uses and benefits. As part of this push, organizations could provide “upskilling” opportunities to staff members at community organizations which would facilitate appropriate data stewardship and use.

* Investing in data-focused projects appropriate to granular subsectors. For instance, efforts that recognize various distinct Asian ethnic groups, as well as the differences in the way they curate and pass down cultural knowledge, could use data systems to capture and disseminate information traditionally transferred through oral traditions, especially among under-digitized communities.

* Upskilling data collection, management and use among individuals within a community who may not have the resources to develop their skills in the data industry. As the report authors noted, “[c]ommunity training has the added benefit of opening up other areas of stable work that can help provide financial stability and advancements for underrepresented and marginalized communities.”

* Supporting an analytic-focused inventory of data-focused policies and regulations which would allow communities to benefit from data use while protecting them from harm of abuse. Within their own data structures, communities could establish queries for every data use applicant or grantee, such as: Why is the data being collected/used? What is the context in which the data is collected or used? What is your data stewardship plan, and how are you evaluating your suppliers and partners who will access or collect data? What is your plan for public disclosure of data collected?

A copy of the report is available here: https://www.aspendigital.org/report/building-a-fair-data-future/

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Source From Non Profit Times