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Full-Text Articles in Medicine and Health Sciences
Librarian Actions To Develop And Sustain Human Research Subject Protection: A Pilot Global Study, Charles J. Greenberg, Sangeeta Narang
Librarian Actions To Develop And Sustain Human Research Subject Protection: A Pilot Global Study, Charles J. Greenberg, Sangeeta Narang
Library Philosophy and Practice (e-journal)
The Institutional Review Board (IRB), also known as an Independent Ethics Committee (IEC), is the most widely adopted process to insure human participant protection. The IRB system is overburdened as human research studies and human participation has dramatically increased without a corresponding increase in reviewing clinicians or ethics staff. Librarian involvement in the IRB process is evident but uneven and unstudied on an international scale. A literature review and international survey attempted to provide professional practice context and librarian reflection on the extent of their involvement, roles, and responsibilities in the IRB or IEC institutional process. Survey results reveal that …
‘‘We Can Wipe An Entire Culture’’: Fears And Promises Of Dna Biobanking Among Native Americans, Roberto Abadie, Kathleen Heaney
‘‘We Can Wipe An Entire Culture’’: Fears And Promises Of Dna Biobanking Among Native Americans, Roberto Abadie, Kathleen Heaney
Department of Sociology: Faculty Publications
This paper explores Native American perceptions on DNA biobanking. A qualitative study was conducted among self-declared Native Americans living off reservation in two Midwest cities. Findings demonstrate a paradox: Informants maintain strong hopes for the transformative power of gene-based research while voicing very particular social anxieties. Emerging genomic technologies elicit concerns over the potential for genetic stigmatization or discrimination based on race, preventing access to health insurance or employment. Frequently, social anxieties adopt the narrative form of conspiracy theories which portray powerful agents exploiting or abusing a disenfranchised population. We argue that while Native Americans do not have a monopoly …