Current Calls For Public Consultation          

Ethical Guidelines for Research Using Pervasive Data
A Notice by the U.S. National Telecommunications and Information Administration on 12/11/2024
Public comment period that ends 01/15/2025.
SUMMARY:
The National Telecommunications and Information Administration (NTIA) is seeking public input on the potential writing of ethical guidelines for the use of “pervasive data” in research. “Pervasive data” refers to data about people gathered through online services. NTIA will rely on these comments, along with stakeholder engagements, in considering whether to draft and issue non-binding guidelines to assist researchers working with pervasive data. Such guidelines, if warranted, would detail how independent third-party researchers [3] can work with pervasive data while meeting ethical expectations of research and protecting individuals’ privacy and other rights…

The goal of ethical guidelines would be to outline principles and best practices that researchers, research institutions, data intermediaries,[4] and online service providers can choose to follow when involved in research with pervasive data…

Pervasive data can be drawn from global networks and may be analyzed by an international community of researchers. Therefore, it is increasingly important to use a global lens to address ethical issues in pervasive data. Advancements in research using pervasive data may benefit from international collaboration and agreed-upon norms for ethical research and the protection of privacy and other rights…

Risks to data subjects presented by research with pervasive data include reidentification of anonymous user accounts; release or inference of information that can be used to perpetuate a range of privacy and other individual-level harms, including fraud, impersonation, discrimination, reputational harms, and emotional distress; and decreased willingness to post and access information online and engage in the digital economy…

Sample Questions:

6. Consent and autonomy are key principles in human subjects research ethics. However, users of online services may be required to divulge certain personal information and/or have no ability to freely make decisions about its use.^[44] How should researchers working with pervasive data consider consent and autonomy?
7. What, if any, would be an appropriate consent model for research with pervasive data? How and how often should consent occur?
8. Are there alternative models to traditional consent that either support autonomy or provide protections for data subjects in cases where autonomy is limited?
9. How, if at all, is user autonomy influenced by context, such as the need to use online services for school, work,^[45] or socializing?
10. What existing ethical frameworks, such as those from professional organizations ^[64] or government agencies,^[65] should be considered when drafting national-level ethical guidelines for research with pervasive data?
11. To what extent do existing frameworks apply to the collection and use of pervasive data?
12. What modifications of existing frameworks might be necessary to ensure that those frameworks are applicable to the needs of research with pervasive data?