News Release

New in Ethics & Human Research, July-August 2022

Big data research and group harm, African American community & biobank research, electronic consent during Covid, and more

Peer-Reviewed Publication

The Hastings Center

Big Data and Group Harm: The Scope of IRB Review
Megan Doerr, Sara Meeder

Much of precision medicine is driven by big health data research—the analysis of massive datasets representing the complex web of genetic, behavioral, environmental, and other factors that impact human well-being. But how well does the Common Rule—the regulation governing federally funded human subjects research—fit the regulatory needs of this type of research? This article suggests that harms that may arise from artificial intelligence and machine-learning technologies used in big health data research—and the increased likelihood that this research will affect public policy—mean it is time to consider whether the current human research regulations prohibit comprehensive, ethical review of big health data research that may result in group harm.

Also in this issue:

Perspectives from a Predominantly African American Community about Biobank Research and a Biobank Consent Form
Laura K. Sedig, E. Hill De Loney, Sarah B. Bailey, Kayte Spector-Bagdady, Bianca Ghita, Lydia Koh Krienke, Raymond Hutchinson

Developing and Implementing Electronic Consent Procedures in Response to Covid-19 Restrictions
Julie R. Bromberg, Evelyn Nimaja, Andrew W. Kiragu, Karla A. Lawson, Lois Lee Isam, W. Nasr, Charles Pruitt, Stephanie M. Ruest, Michael J. Mello

Privacy Risks in Microbiome Research: Public Perspectives before and during a Global Pandemic
Andrea Shin, Huiping Xu

 

Table of contents of the July-August 2022 Ethics & Human Research: https://onlinelibrary.wiley.com/toc/25782363/2022/44/4

 

For more information, contact:

Susan Gilbert

Director of Communications

The Hastings Center

845-424-4040 x244

gilberts@thehastingscenter.org.

 


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