Preserving Privacy & Promoting Learning: Technology to Empower Belmont 2.0

8 Pages Posted: 29 May 2019

See all articles by Marielle S. Gross

Marielle S. Gross

Johns Hopkins Berman Institute of Bioethics

Robert C. Miller, Jr.

ConsenSys Health

Date Written: May 7, 2019

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

Suggested Citation

Gross, Marielle S. and Miller, Jr., Robert, Preserving Privacy & Promoting Learning: Technology to Empower Belmont 2.0 (May 7, 2019). Available at SSRN: https://ssrn.com/abstract=3390979 or http://dx.doi.org/10.2139/ssrn.3390979

Marielle S. Gross (Contact Author)

Johns Hopkins Berman Institute of Bioethics ( email )

1809 Ashland Ave.
Baltimore, MD 21205
United States

Robert Miller, Jr.

ConsenSys Health ( email )

New York, NY
United States

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