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Bystanders in human subject research

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Browsing: Bystanders in human subject research


Sara Meeder

Posts: 18
posted

I am trying to find out more information about how researchers and IRBs view the issue of non-participants or "bystanders" in human subject research, particularly around the type of bystander data collection considered permissable, protections for and notification of non-participants. Any laws or regulations that might be applicable in cases of bystanders in research. I know other posts have referred to specific aspects of privacy rules. I'm also trying to get a feel for the degree to which bystander data collection occurs in research studies, the types of data collected and how these issues are viewed by the public and by IRBs.

I also recall discussions about participants wearing signs warning non-paritcipants about data collection. I'm looking at situations where this type of notification would be impracticable.

Any comments are welcome. Likewise with any suggestions for reading on this topic.

Camille Nebeker

Posts: 35
posted in reply to sara meeder

Hi Sara,

We haven't yet studied bystander percpetions but have a few papers that speak to some of this. One by Kelly et al. (2013) and the other that we published last year in Translational Behavioral Medicine. Here are the citations:

Kelly et al. https://www.ncbi.nlm.nih.gov/pubmed/23415131

Nebeker et al. https://www.ncbi.nlm.nih.gov/pubmed/27688250

Camille

Sara Meeder

Posts: 18
posted in reply to camille nebeker

Thanks, Camille. I have someone here working on a lit review, so hopefully I'll have more to share shortly.