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The majority of the 3,106 U.S. adults that Shin and Xu surveyed expressed a desire for consent materials with detailed information about potential privacy risks associated with microbiome data. Participants, who took the survey after Covid-19 was declared a nationwide emergency, were more likely to indicate higher levels of concern about and greater familiarity with microbiome privacy risks.
Perspectives from a predominantly African American community about biobank research and a biobank consent form
Sedig and colleagues identified trust as the most common theme in transcripts of focus group discussions about the consent form for the University of Michigan Medical School Central Biorepository. Participants expressed distrust of medical and research communities, perceived contradictions in the consent materials, stressed the significance of a strong doctor-patient relationship, and emphasized the importance of allowing time to process information.
Doerr and Meeder discuss an ambiguous provision in the Common Rule that may limit IRBs from considering long-term risks, such as potential group harms associated with the outcomes of big health data research.