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Navigating ethical quandaries with the privacy dilemma of biomedical datasets

With decreasing cost of biomedical technologies, the scale of the genetic and healthcare data have exponentially increased and become available to wider audiences. Hence, privacy of patients and study participants has garnered the attention of researchers and regulators alike. Availability of geneti...

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Autores principales: Gürsoy, Gamze, Doerr, Megan, Wilbanks, John, Wagner, Jennifer K., Tang, Haixu, Brenner, Steven E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7329229/
https://www.ncbi.nlm.nih.gov/pubmed/31797643
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author Gürsoy, Gamze
Doerr, Megan
Wilbanks, John
Wagner, Jennifer K.
Tang, Haixu
Brenner, Steven E.
author_facet Gürsoy, Gamze
Doerr, Megan
Wilbanks, John
Wagner, Jennifer K.
Tang, Haixu
Brenner, Steven E.
author_sort Gürsoy, Gamze
collection PubMed
description With decreasing cost of biomedical technologies, the scale of the genetic and healthcare data have exponentially increased and become available to wider audiences. Hence, privacy of patients and study participants has garnered the attention of researchers and regulators alike. Availability of genetic and health care information for uses not anticipated at the time of collection gives rise to privacy concerns such that people suffer dignitary harm when their data is used in ways they did not desire or intend, even if no concrete economic damage results. In this workshop, we explore the issues surrounding data use to advance human health from a privacy perspective. Broadly this field can be considered in two encompassing areas: (1) Ethics and regulation of privacy: The ethical and regulatory frames through which we can consider privacy, the existing regulations regarding privacy and what is on the horizon, and implementation of such ethical considerations for data with the new Common Rule. (2) Approaches to ensuring privacy using technology: The technologies that allow responsible use and sharing of data such as encryption and the quantification of privacy leakages in publicly available data through privacy attacks for better risk-assessment tools.
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spelling pubmed-73292292020-07-01 Navigating ethical quandaries with the privacy dilemma of biomedical datasets Gürsoy, Gamze Doerr, Megan Wilbanks, John Wagner, Jennifer K. Tang, Haixu Brenner, Steven E. Pac Symp Biocomput Article With decreasing cost of biomedical technologies, the scale of the genetic and healthcare data have exponentially increased and become available to wider audiences. Hence, privacy of patients and study participants has garnered the attention of researchers and regulators alike. Availability of genetic and health care information for uses not anticipated at the time of collection gives rise to privacy concerns such that people suffer dignitary harm when their data is used in ways they did not desire or intend, even if no concrete economic damage results. In this workshop, we explore the issues surrounding data use to advance human health from a privacy perspective. Broadly this field can be considered in two encompassing areas: (1) Ethics and regulation of privacy: The ethical and regulatory frames through which we can consider privacy, the existing regulations regarding privacy and what is on the horizon, and implementation of such ethical considerations for data with the new Common Rule. (2) Approaches to ensuring privacy using technology: The technologies that allow responsible use and sharing of data such as encryption and the quantification of privacy leakages in publicly available data through privacy attacks for better risk-assessment tools. 2020 /pmc/articles/PMC7329229/ /pubmed/31797643 Text en Open Access chapter published by World Scientific Publishing Company and distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC) 4.0 License (http://creativecommons.org/licenses/by-nc-nd/4.0/) .
spellingShingle Article
Gürsoy, Gamze
Doerr, Megan
Wilbanks, John
Wagner, Jennifer K.
Tang, Haixu
Brenner, Steven E.
Navigating ethical quandaries with the privacy dilemma of biomedical datasets
title Navigating ethical quandaries with the privacy dilemma of biomedical datasets
title_full Navigating ethical quandaries with the privacy dilemma of biomedical datasets
title_fullStr Navigating ethical quandaries with the privacy dilemma of biomedical datasets
title_full_unstemmed Navigating ethical quandaries with the privacy dilemma of biomedical datasets
title_short Navigating ethical quandaries with the privacy dilemma of biomedical datasets
title_sort navigating ethical quandaries with the privacy dilemma of biomedical datasets
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7329229/
https://www.ncbi.nlm.nih.gov/pubmed/31797643
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