NIH VideoCast - Privacy & Health Research in a Data-Driven World

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Privacy & Health Research in a Data-Driven World

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Air date:	Thursday, September 19, 2019, 8:15:00 AM Time displayed is Eastern Time, Washington DC Local
Views:	Total views: 7,719 (5,056 Live, 2,663 On-demand)
Category:	Conferences
Runtime:	06:25:16
Closed captioning:	Check box to display CC outside of the video Note: You can drag the captioning window around and resize it
Description:	Submit your questions for consideration on the day at https://www.pigeonhole.at/ohrp Session 1: Is Privacy a Casualty of Advancing Research? The goal of this session is to explore the problem of privacy protection in a data-rich world, the tensions that exist between the societal good that could come from big data research and the real and perceived risks to individuals, as well as the public’s perspectives about broad data sharing. Invitees will discuss the ethical considerations related to large-scale open data sharing including questions about data ownership, the types and goals of big data research that might be pursued, what needs to be done to maintain public trust in health research, and who are the people responsible. Session 2: Approaches to Protecting Privacy and Confidentiality Speakers representing diverse stakeholders in the research enterprise will discuss policies, techniques, and technologies for controlled use, data protection, and informed consent as ways to protect individual privacy and data confidentiality. The goal of this session is to explore the challenges of privacy protection for health-related big data research conducted on a variety of platforms and in various settings. Invitees will also consider the ethical and practical challenges posed by data-sharing across cultures and boundaries. Session 3: Protecting Privacy and Confidentiality: A Shared Responsibility The goals of this session are to discuss some of the challenges facing IRBs and institutions in the review of proposed data sharing options for research that falls under the Common Rule, and explore ethical oversight of big data research that falls outside the scope of the Common Rule. Invitees will explore the possible roles of a variety of stakeholders for supporting responsible conduct of research involving big data in addition to potential approaches to ethical evaluation of proposed big data research. For more information, visit https://www.hhs.gov/ohrp/education-and-outreach/exploratory-workshop/2019-workshop/index.html

NLM Title:	Privacy & health research in a data-driven world / Office for Human Research Protections, HHS.
Author:	OHRP Exploratory Workshop
Publisher:
Abstract:	(CIT): Session 1: Is Privacy a Casualty of Advancing Research? The goal of this session is to explore the problem of privacy protection in a data-rich world, the tensions that exist between the societal good that could come from big data research and the real and perceived risks to individuals, as well as the public's perspectives about broad data sharing. Invitees will discuss the ethical considerations related to large-scale open data sharing including questions about data ownership, the types and goals of big data research that might be pursued, what needs to be done to maintain public trust in health research, and who are the people responsible. Session 2: Approaches to Protecting Privacy and Confidentiality. Speakers representing diverse stakeholders in the research enterprise will discuss policies, techniques, and technologies for controlled use, data protection, and informed consent as ways to protect individual privacy and data confidentiality. The goal of this session is to explore the challenges of privacy protection for health-related big data research conducted on a variety of platforms and in various settings. Invitees will also consider the ethical and practical challenges posed by data-sharing across cultures and boundaries. Session 3: Protecting Privacy and Confidentiality: A Shared Responsibility The goals of this session are to discuss some of the challenges facing IRBs and institutions in the review of proposed data sharing options for research that falls under the Common Rule, and explore ethical oversight of big data research that falls outside the scope of the Common Rule. Invitees will explore the possible roles of a variety of stakeholders for supporting responsible conduct of research involving big data in addition to potential approaches to ethical evaluation of proposed big data research.
Subjects:	Big Data Biomedical Research Confidentiality Data Mining Information Dissemination Privacy
Publication Types:	Congress Webcast

NLM Classification:	W 26.55.I4
NLM ID:	101755459
CIT Live ID:	33360
Permanent link:	https://videocast.nih.gov/watch=33360

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