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Bystanders in human subject research

social media research ethics bystanders genetic sampling ethics personal health data
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Browsing: Bystanders in human subject research

Sara Meeder

Posts: 20
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: 40
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: 20
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.

Doug Latuseck

Posts: 2
posted in reply to sara meeder

WIth my IRB member hat on, I think of it in this manner. Recognize that as we continue to increasingly utilize the tools of technology in social sciences research, we also have a responsibility to consider the unintended consequences for bystanders. As we collect video, gps data linked to social networks, and other "naturalistic" observations of people going about their business on any given day, we are ethically bound to consider the potential negative consequences for the indivuduals about whom data is potentially gathered without their consent. Could an image of a person at a location they are not expected to be or with a person they are intending to interact with secretly (for whatever reason) have negative consequences for their personal or professional life? It is very easy to gather data about people without their knowledge just by hitting record on your mobile phone or surfing the web. While the information "publicly available" has increased and the means to capture and store it with technology have been greatly simplified, our ethical reasoning around maintaining privacy in a digital world remains in its infancy. Take great care to uphold the general ethical principle of nonmaleficence.

Sara Meeder

Posts: 20
posted in reply to doug latuseck

Thanks for the feedback, Doug. I get the idea of nonmaleficence, but I think it could be problematic taken to the extreme. If we're truly going to make sure bystanders have no possible risk, that would pretty effectively put an end to things like genetic research, as well as a vast array of other types of studies. We're working now to create a framework for how to evaluate level and type of risk to non-participants in comparison to risk to participants and potential societal benefits of the study. It's certainly an interesting topic, and one that I don't thing the research community can continue to contemplate on a wholly ad hoc basis. Particularly for emerging tech, big data and precision medicine.

Best,
Sara

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