Dataveillance and Human Rights

Publication Date:
Updated:

Collection Editor(s):

Collection Editor(s)
Name & Degree
Jennifer K. Wagner, J.D., Ph.D.
Work Title/Institution
Assistant Professor of Law, Policy, and Engineering, Penn State University

Introduction

Nearly 75 years ago, countries agreed to an International Bill of Human Rights, that included, among other fundamental rights, a right to privacy, a right to science, and a right to health. Cohesive efforts to realize these rights, however, remain elusive—particularly in the datafied culture we live in today with pervasive consumer technologies and numerous large-scale biobanking and precision health endeavors (such as the National Institutes of Health (NIH) All of Us Research Program, National Cancer Institute (NCI)…

SHOW MORE

Nearly 75 years ago, countries agreed to an International Bill of Human Rights, that included, among other fundamental rights, a right to privacy, a right to science, and a right to health. Cohesive efforts to realize these rights, however, remain elusive—particularly in the datafied culture we live in today with pervasive consumer technologies and numerous large-scale biobanking and precision health endeavors (such as the National Institutes of Health (NIH) All of Us Research Program, National Cancer Institute (NCI) Cancer Moonshot, BRAIN Initiative, and Bridge2AI Consortium).

In the United States, the origins of information privacy rights (or the rights of individuals to control who can access their personal information and under what circumstances) can be attributed in part to an 1890 Harvard Law Review article and a 1973 governmental report proposing principles for “fair information practices,” which, as was highlighted in a 2012 report on the privacy concerns raised by whole genome sequencing by the Presidential Commission for the Study of Bioethical Issues, served as a foundation for many federal and state statutes offering data protections. These statutes have typically focused on a sector-specific approach. This approach has been criticized as outdated given both the utility and flow of data that transcends such boundaries.

Recent U.S. Supreme Court rulings—such as Carpenter v. United States, 2018; TransUnion LLC v. Ramirez, 2021;  and perhaps, most notably, Dobbs v. Jackson Women’s Health Organization, 2022—have prompted the sounding of alarm bells from privacy lawyers, scholars, and other professionals. These individuals recognize the many ways in which weakened privacy protections —whether diminishing informational privacy rights or decisional privacy rights (the rights of individuals to make decisions free of interference by others)—will disproportionately impact various groups, including historically excluded and marginalized groups. Furthermore, this erosion of privacy rights threatens to further undermine health equity, as it affects people’s willingness to participate in research, seek healthcare, and preserve the integrity of the patient-physician relationship. It is crucial to consider how state laws might exacerbate or ameliorate those problems.

The literature in this collection highlights some of the ethical, legal, and social challenges to existing privacy protections that the diversity and proliferation of dataveillance practices raise and suggests some viable solutions to these challenges in the health research and care contexts.

SHOW LESS
Collection Header
Reasons to Protect Privacy and Promote Data Justice
Body
Collection Header
Privacy Protection Strategies, Law Enforcement, & Governance
Body
Collection Header
Limits of the Individual Rights and Organizational Duties Privacy Framework
Body
Collection Header
Privacy and Public Perspectives on Data Sharing
Body

Share

About ELSIhub Collections

ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.

ELSIhub Collections