Jan. 22, 2025 — Public Responsibility in Medicine and Research (PRIM&R) recently called for establishing clear ethical guidelines to ensure data research is conducted responsibly. PRIM&R’s statement is part of the national nonprofit’s comment submission to the National Telecommunications and Information Administration (NTIA), regarding the potential development of ethical guidelines for research using “pervasive data.”
The NTIA defines “pervasive data” as data that “may include text, images, videos, biometric information, information about a data subject's behavior (purchases, financial standing, media consumption, search history, medical conditions, location, etc.), and other information that makes up a person's digital footprint.”
“The development of national ethical guidelines represents an opportunity and an important step toward ensuring pervasive data research is conducted responsibly and ethically, fostering public trust while promoting valuable scientific inquiry,” PRIM&R Executive Director Ivy R. Tillman, EdD, CIP wrote. “These guidelines should build upon existing ethical principles, such as those articulated in the Belmont Report, to offer clear and comprehensive guidance for researchers navigating the complexities of pervasive data.”
The NTIA, which is part of the U.S. Department of Commerce, explained it is exploring ethical guidelines that “would detail how independent third-party researchers can work with pervasive data while meeting ethical expectations of research and protecting individuals' privacy and other rights.” The NTIA stated, “researchers and organizations have called for ethical guidelines to help ensure this work is done responsibly.”
PRIM&R’s comments, which were submitted to the NTIA, focused on roughly 10 specific questions posed by the NTIA.
“Ethical guidelines can help researchers anticipate and mitigate potential societal-level risks, such as discrimination, bias, and the erosion of trust in research,” Tillman wrote, responding to the NTIA’s question exploring the potential benefits of developing national-level ethical guidelines for researchers collecting, analyzing, and sharing pervasive data.
The NTIA's Dec. 11, 2024 request for public comments noted, research “with pervasive data is widespread and in high demand … researchers have developed methods for accessing pervasive data, including large-scale collection of publicly available information, entering into agreements with online service providers, and managing collections of user-contributed data.”
In the NTIA’s request for public comments, the agency noted, “The National Artificial Intelligence (AI) Initiative Act of 2020, along with the CHIPS and Science Act of 2022, include landmark investments in AI research to advance the use of trustworthy AI. Such research often relies on pervasive data and should be conducted ethically.”
“Clear, comprehensive, and thoughtfully developed ethical guidelines, which complement existing scientific research ethical guidelines, will be crucial to ensuring the responsible advancement of research in this rapidly evolving area,” Tillman wrote, concluding PRIM&R’s comments to NTIA.
PRIM&R has more than 3,500 active members throughout the research enterprise.
“NTIA will rely on these comments, along with engagements with researchers, civil society, research institutions, industry, and other government bodies, to consider whether to draft and issue guidelines to assist researchers working with pervasive data,” the agency wrote in its request for public comments.
To read PRIM&R’s comments to the NTIA, click here
To read the NTIA request for comment, click here
May 29, 2025 
