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tsuomela : irb   27

The Censor's Hand | The MIT Press
"Medical and social progress depend on research with human subjects. When that research is done in institutions getting federal money, it is regulated (often minutely) by federally required and supervised bureaucracies called “institutional review boards” (IRBs). Do—can—these IRBs do more harm than good? In The Censor’s Hand, Schneider addresses this crucial but long-unasked question. Schneider answers the question by consulting a critical but ignored experience—the law’s learning about regulation—and by amassing empirical evidence that is scattered around many literatures. He concludes that IRBs were fundamentally misconceived. Their usefulness to human subjects is doubtful, but they clearly delay, distort, and deter research that can save people’s lives, soothe their suffering, and enhance their welfare. IRBs demonstrably make decisions poorly. They cannot be expected to make decisions well, for they lack the expertise, ethical principles, legal rules, effective procedures, and accountability essential to good regulation. And IRBs are censors in the place censorship is most damaging— universities. In sum, Schneider argues that IRBs are bad regulation that inescapably do more harm than good. They were an irreparable mistake that should be abandoned so that research can be conducted properly and regulated sensibly."
book  publisher  irb  human-subjects  research  ethics 
march 2018 by tsuomela
Supporting Ethical Data Research: An Exploratory Study of Emerging Issues in Big Data and Technical Research || Data & Society
"In the era of big data, how do researchers ethically collect, analyze, and store data? danah boyd, Emily F. Keller, and Bonnie Tijerina explore this question and examine issues from how to achieve informed consent from research subjects in big data research to how to store data securely in case of breaches. The primer evolves into a discussion on how libraries can collaborate with computer scientists to examine ethical big data research issues."
big-data  research  ethics  irb 
october 2016 by tsuomela
Human Subjects Research Regulation | The MIT Press
"The current framework for the regulation of human subjects research emerged largely in reaction to the horrors of Nazi human experimentation, revealed at the Nuremburg trials, and the Tuskegee syphilis study, conducted by U.S. government researchers from 1932 to 1972. This framework, combining elements of paternalism with efforts to preserve individual autonomy, has remained fundamentally unchanged for decades. Yet, as this book documents, it has significant flaws—including its potential to burden important research, overprotect some subjects and inadequately protect others, generate inconsistent results, and lag behind developments in how research is conducted. Invigorated by the U.S. government’s first steps toward change in over twenty years, Human Subjects Research Regulation brings together the leading thinkers in this field from ethics, law, medicine, and public policy to discuss how to make the system better. The result is a collection of novel ideas—some incremental, some radical—for the future of research oversight and human subject protection. After reviewing the history of U.S. research regulations, the contributors consider such topics as risk-based regulation; research involving vulnerable populations (including military personnel, children, and prisoners); the relationships among subjects, investigators, sponsors, and institutional review boards; privacy, especially regarding biospecimens and tissue banking; and the possibility of fundamental paradigm shifts."
book  publisher  research  ethics  irb  human-subjects 
november 2014 by tsuomela
AAUP recommends more researcher autonomy in IRB reform | Inside Higher Ed
"A new report by the American Association of University Professors recommends curtailing the power of institutional review boards (IRB) and entrusting researchers with the ability to decide whether individual projects involving human subjects should be exempt from regulation."
irb  human-sciences  research  academia  academic  ethics 
july 2013 by tsuomela

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