Indigenous Peoples & Access to Specialized Research Data
In the October 31, 2024, digital edition of Science, Kai Kupferschmidt reports on how indigenous groups are beginning to assert control over access to research data collected from them or their lands. Their goal: prevent recurrence of past abuses and misuses associated with such data, including being excluded from the benefits of products developed, at least in part, using such data without consent..
The U.S. government, a major research funder and long-time proponent of "open access," is also moving toward more controlled access. This is happening at the same time U.S. government policies are promoting and requiring data sharing and access when U.S. taxpayers are footing the bill.
I support requiring such access and sharing measures as long as two conditions are met.
First, accommodations must be made to ensure that potential data users can locate and access the data. Data must be transferred to and stored in accessible, well-managed repositories with appropriate governance of both data and metadata.
Second, someone has to cover the costs of storing, managing, and providing access to this taxpayer-subsidized data; it’s essential to keep the principle of “there ain’t no such thing as a free lunch” (TANSTAAFL) in mind.
If both of these conditions can be met—while also providing special considerations for who can access data related to indigenous populations—there should be no issue.
Still, any time special conditions are added to data access, costs somewhere along the data lifecycle can be affected. Any special data handling requirements (e.g., additional rules and regulations controlling permission for access and use) need to be accounted for in the planning, funding, and administration of any data-generating research program. One example of this is discussed in New Government Web Site Makes “Restricted Microdata” More Accessible To Researchers.
Why make exceptions to "general open access requirements" for data related to indigenous populations? Answering that question touches on both fairness and politics.
We already treat different types of data with varying levels of sensitivity. For example, personal medical information and sensitive manufacturing and industrial data are specially regulated under both existing and evolving federal protections.
What about data like DNA sequencing of indigenous people? Is special treatment for a specific subgroup justified?
I think so, even if additional access points and repository access regulations complicate or increase the cost of research. Past harm may be uncorrectable, but If we can prevent the mistreatment of any group by being more protective of its data, isn’t that a worthwhile goal?
I believe it is, but I also think that controls around access to research data must continue to evolve. We may eventually find, for example, that protections associated with particular data types need to focus more on their use and application than on their source. Until then, recognizing past wrongs to indigenous groups while working to prevent future problems should be a reasonable goal for both federal funders and researchers.
Copyright (c) 2024 by Dennis D. McDonald
