Large-scale health-data aggregation can escape existing legal medical protections
Evidence
There are issues here for sure. What does it mean to obtain the consent of a whole population (in Iceland, the data deal was done in secret, without consulting Iceland’s citizens explicitly, which proved highly controversial)? Barbara Evans, a leading scholar of health and data law, argues that we need elaborate processes for collective management of data gathered in this way. The risks increase when we realize that frequent claims that medical data is securely anonymized may be unreliable. Under any political system, the security of health data must depend on how far its collection can be insulated from market dynamics (since values such as patient confidentiality are not, after all, market values). Health data is, in any case, quite specific and highly contextual. A proposal for everyone to submit to continuous collection of all their health data would be very different in its implications for the self’s minimal integrity than would be specific individuals sharing specific health data for a specific beneficial purpose. Legal scholars fear that it is exactly such large-scale aggregations of health data that risk escaping the legal protections that have long been integral to medical ethics and law. — Nick Couldry & Ulises A. Mejias, The Costs of Connection, 529
Categorization
- XREF: Iceland’s secret population-wide data deal parallels the invisible consent problems central to the attention/surveillance school’s critique of platform extraction. — connects to: Distributed commercial data collection is structurally opaque and hard to contest — Nick Couldry & Ulises A. Mejias, The Costs of Connection: How Data Is…, 389; FDA-approved health apps have understudied data-transmission practices — Shoshana Zuboff, The Age of Surveillance Capitalism, 780; General data-protection frameworks cannot challenge extractive data economies. — Nick Couldry & Ulises A. Mejias, The Costs of Connection: How Data Is…, 555 (+3 more)
- QUESTION: Worth chasing: what exactly was the Icelandic data deal and how did the controversy resolve, and does any jurisdiction yet have a legal model for collective data management?
Broader Connections
- Anonymized medical records can be re-identified using public voter lists
#exemplifies(0.82) — Shoshana Zuboff, The Age of Surveillance Capitalism, 2298 - FDA-approved health apps have understudied data-transmission practices
#exemplifies(0.80) — Shoshana Zuboff, The Age of Surveillance Capitalism, 780 - Distributed commercial data collection is structurally opaque and hard to contest
#corroborates(0.78) — Nick Couldry & Ulises A. Mejias, The Costs of Connection, 389 - General data-protection frameworks cannot challenge extractive data economies.
#expands(0.75) — Nick Couldry & Ulises A. Mejias, The Costs of Connection, 555