ELSI Issues in Citizen Science: Cancer and Health Research Using Mobile Devices

From BrothersBrothers
Date Updated 2016/08/11
Event Section Grants and Contracts
Event Date
Event Start Date 2017/05/04
Event End Date 2020/04/30
Role/Degree Co-Investigator
Title Addressing ELSI Issues in Unregulated Health Research Using Mobile Devices
Organization/Committee/Department/Journal Name National Institutes of Health, National Cancer Institute
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CVDescription Health research using mobile devices, such as smartphones and tablets, is becoming more common. New hardware and software can transform a mobile device into a sophisticated data collection and analytical platform. These technologies are fundamentally changing health research because the recruitment, data collection, and data sharing are conducted online without any face-to-face interaction between researchers and research participants.

Increasingly, this research also is being conducted by researchers who do not receive any federal funding and are not subject to the Common Rule, the FDA research regulations, and the HIPAA Privacy Rule. Yet, unregulated health research using mobile devices raises numerous important ethical issues including external review, recruitment, inclusion and exclusion criteria, informed consent, privacy and security, incidental findings, and data sharing.

This project has the following three aims: Aim 1: Conduct in-depth qualitative interviews to elicit thought leaders' perspectives on the risks and appropriate protections for participants in unregulated health research using mobile devices. Aim 2: Develop a detailed analysis of the ELSI issues through a series of 4 meetings by a diverse, expert working group, and use a consensus-building methodology to develop recommendations. Aim 3: Devise and implement educational programs and translation of the consensus recommendations.

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Grant Status Current
Funder Grant Number R01CA207538
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Grant PI Mark Rothstein
Grant Direct Costs $1,809,556
Grant Indirect Costs $520,237
Grant Percent Effort 10
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