Participatory Neuroscience: Something to Strive For?
|Image courtesy of Pixabay.
In the last few decades, there has been an increasing push towards making science more participatory by engaging those who are part of or invested in the community that will be impacted by the research in the actual research process, from determining the questions that are worth asking, to contributing to experimental design, to communicating findings to the public. Some of this push stems from the recognition that research is always value-laden and that the values guiding science have long been those of an elite and unrepresentative few (Longino, 1990). This push also has roots in feminist standpoint theory, which recognizes the way in which marginalized individuals may have an epistemic advantage when it comes to identifying problematic assumptions within a relevant knowledge project (Wylie, 2003). Additionally, many have noted how including the voices of those likely to be impacted by research can support the process itself (e.g. by identifying meaningful outcome measures) (Dickert & Sugarman, 2005). As a result, participatory research is becoming widely recognized as having both ethical and epistemic advantages. The field of neuroscience, however, which takes the brain as its primary target of investigation, has been slow to take up such insights. Here, I outline five stages of participatory research and the uptake of neuroscientific research in each, discuss the challenges and benefits of engaging in such research, and suggest that the field has an obligation, particularly in some cases, to shift towards more participatory research.
The first and lowest stage of participatory research is represented by most scientific projects, in which all power and decision-making lies in the hands of the investigators. The vast majority of neuroscientific research takes place at this stage of participation (Robertson, Hiebert, Seergobin, Owen, & MacDonald, 2015).
|Members of a citizen science team
Image courtesy of Wikimedia Commons.
The fifth and final stage of participatory research is exemplified by user-led research, in which a scientific project is entirely conducted by individuals outside of industry or the academy (e.g. survivor research in mental health) . I have found no examples of research within neuroscience that takes place at this stage.
|Participatory action research
Image courtesy of Flickr.
An answer to this question requires a look at the benefits that participatory research can produce, which are largely captured by three Rs: Rigor, Relevance, and Reach (Balazs & Morello-Frosch, 2013). Participatory research enhances scientific rigor through encouraging both reflection and transparency during the process; community members may also contribute to the identification of assumptions and issues, including those stemming from various conflicts of interest. Participatory research can also increase the relevance of research, because topics neglected in mainstream research are more likely to be taken up and results that will directly benefit those impacted by the investigation are often pursued. Finally, the reach of the knowledge is expanded, in the community may have the ability to access people or places that scientists could not, both during recruitment and during the transmission of results, which can lead to both larger and more diverse data sets, which in turn, improves generalizability (Cooper, 2017).
Phoebe Friesen is a post doctoral fellow at the Ethox Centre at the University of Oxford. She recently received a PhD in philosophy from the CUNY Graduate Center after completing her doctoral work, which focused on theoretical and ethical issues related to the placebo effect. She works primarily on questions within the realms of research ethics, bioethics, and psychiatry.
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Friesen, P. (2018). Participatory Neuroscience: Something to Strive For? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/06/participatory-neuroscience-something-to.html