Real Safety AI Foundation / Research

Privacy, Surveillance, and Consent

Outside the Perimeter: Commercial Collection of Crisis Data and the Subpart That Was Never Written

Publisher: Real Safety AI Foundation

Working paper. Not peer reviewed.

Written
August 2026
Version
v1.2
Pages
18
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Abstract

American human subjects protection was built around institutions, because the abuses that produced it happened inside institutions. The Common Rule places its review requirement at the point where a covered institution touches a person. This paper argues that the location of that requirement, rather than its substance, is now the operative failure. When the regulated boundary is drawn around the institution, collection can be performed outside it by commercial and quasiinstitutional actors and then delivered inward as material that already exists, at which point the consent question that would have governed the collection is never presented to any review body. The paper names this pattern collection displacement and names the device that carries it the intermediary shield. It traces a documented fortyeight year refusal to write a subpart for adults whose decisional capacity is uncertain or impaired, from the National Commission in 1978 through the National Bioethics Advisory Commission in 1998 to the revised Common Rule of 2018, and shows that even the subpart repeatedly asked for would not reach the present problem, because the collection is performed by parties the rule does not cover. Two instances are examined: the Crisis Text Line and Loris.ai arrangement disclosed in 2022, and a current arrangement in which an unincorporated and then newly incorporated organization solicited conversation records from people in acute psychiatric crisis and supplied them to researchers at multiple universities. The conclusion is that the population most likely to be recruited during a mental health emergency is the one population with no dedicated regulatory protection, and that the collection reaching them now sits outside the perimeter the regulations govern.

Keywords

  • research ethics
  • human subjects protection
  • collection displacement
  • intermediary shield
  • institutional review board
  • decisional capacity
  • secondary data use
  • data brokerage
  • psychiatric crisis
  • informed consent
  • digital mental health
  • Common Rule

Plain language slides

First slide of the plain language summary of Outside the Perimeter: Commercial Collection of Crisis Data and the Subpart That Was Never WrittenOpen the 29-slide summary (PDF)

Suggested citation

Gilly, Travis. "Outside the Perimeter: Commercial Collection of Crisis Data and the Subpart That Was Never Written." Real Safety AI Foundation Working Paper, August 2026. https://realsafetyai.org/research/vxyj7g/

Other versions

This paper is also posted on SSRN.

SSRN version

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