Preserving Privacy & Promoting Learning: Technology to Empower Belmont 2.0

Abstract

The Health Insurance Portability and Accountability Act has been insufficient for guarding against ethical violations involving research on health data in the age of the “internet of medical things,” smartphone apps and artificial intelligence. Concerns regarding loss of control and privacy of health data are growing, as are calls for updated ethical guidelines for big data research. In this piece, we discuss how two innovations: blockchain technology and privacy-preserving computational models, may be foundational for the new ethical guidelines, particularly given their potential to resolve fundamental tensions between our concurrent obligations to protect individuals’ health data rights and to promote learning from health data for the good of society.

Keywords: learning healthcare systems, data privacy, big data research, research ethics, bioethics, blockchain technology, privacy preserving technology, secure computation, cryptography, health data, healthcare records, HIPAA, Belmont Report