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Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge

Stewards of social data face a fundamental tension. On one hand, they want to make their data accessible to as many researchers as possible to facilitate new discoveries. At the same time, they want to restrict access to their data as much as possible to protect the people represented in the data. I...

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Detalles Bibliográficos
Autores principales: Lundberg, Ian, Narayanan, Arvind, Levy, Karen, Salganik, Matthew J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10284584/
https://www.ncbi.nlm.nih.gov/pubmed/37347012
http://dx.doi.org/10.1177/2378023118813023
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author Lundberg, Ian
Narayanan, Arvind
Levy, Karen
Salganik, Matthew J.
author_facet Lundberg, Ian
Narayanan, Arvind
Levy, Karen
Salganik, Matthew J.
author_sort Lundberg, Ian
collection PubMed
description Stewards of social data face a fundamental tension. On one hand, they want to make their data accessible to as many researchers as possible to facilitate new discoveries. At the same time, they want to restrict access to their data as much as possible to protect the people represented in the data. In this article, we provide a case study addressing this common tension in an uncommon setting: the Fragile Families Challenge, a scientific mass collaboration designed to yield insights that could improve the lives of disadvantaged children in the United States. We describe our process of threat modeling, threat mitigation, and third-party guidance. We also describe the ethical principles that formed the basis of our process. We are open about our process and the trade-offs we made in the hope that others can improve on what we have done.
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spelling pubmed-102845842023-06-21 Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge Lundberg, Ian Narayanan, Arvind Levy, Karen Salganik, Matthew J. Socius Article Stewards of social data face a fundamental tension. On one hand, they want to make their data accessible to as many researchers as possible to facilitate new discoveries. At the same time, they want to restrict access to their data as much as possible to protect the people represented in the data. In this article, we provide a case study addressing this common tension in an uncommon setting: the Fragile Families Challenge, a scientific mass collaboration designed to yield insights that could improve the lives of disadvantaged children in the United States. We describe our process of threat modeling, threat mitigation, and third-party guidance. We also describe the ethical principles that formed the basis of our process. We are open about our process and the trade-offs we made in the hope that others can improve on what we have done. 2019 2019-09-10 /pmc/articles/PMC10284584/ /pubmed/37347012 http://dx.doi.org/10.1177/2378023118813023 Text en Article reuse guidelines: sagepub.com/journals-permissions (https://us.sagepub.com/en-us/journals-permissions) https://creativecommons.org/licenses/by-nc/4.0/Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) ) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Article
Lundberg, Ian
Narayanan, Arvind
Levy, Karen
Salganik, Matthew J.
Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge
title Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge
title_full Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge
title_fullStr Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge
title_full_unstemmed Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge
title_short Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge
title_sort privacy, ethics, and data access: a case study of the fragile families challenge
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10284584/
https://www.ncbi.nlm.nih.gov/pubmed/37347012
http://dx.doi.org/10.1177/2378023118813023
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