Time to open up knowledge generation to people untrained in science It is to the benefit of science and society to engage the public in supporting and questioning scientific knowledge. But the very engagement unsettles the current boundaries between what is considered valid knowledge and what is not. By ELANA BRIEF Published November 16, 2009

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VANCOUVER, B.C.—Until recently the notion of "democratizing" science—reforming the scientific elite—seemed ridiculous to me. I had spent years of my life in graduate school, surrounded by fleece-wearing, coffee-drinking, slightly introverted physicists. I saw no evidence of an elite. But working in women's health research over the last few years, I have begun to understand how knowledge is related to power. Power can be held by people conducting research, but more importantly there is an automatic prestige associated with science because scientific knowledge is the dominant epistemology in our society.

Epistemology describes how we know what we know. What do we consider valid knowledge and data? In her book, Pythagoras' Trousers: God, Physics, and the Gender Wars, Margaret Wertheim writes: "In the modern West, matter, space, and time have all been defined in purely mathematical terms, and we have located ourselves within this framework. Rather than see ourselves in relation to mythical heroes, gods and religious laws, we in the West see ourselves now in relation to atoms, stars, and scientific laws." As a society we afford special status to objectivity over subjectivity and quantifiable measures over qualitative descriptions.

Surely the preeminence of science arises from its unprecedented success in explaining and predicting physical phenomena. Science touches almost all aspects of our lives from medicine to communications, transportation, and entertainment. But inherent in science's dominance are questions about who can participate and who is excluded. Whose ideas are promoted, and whose ideas are marginalized.

Given that, as a culture, we allow science to explain and affect our lives so greatly, it is meaningful to consider how scientific research may be influenced by outside perspectives. Take women's health research: the historical exclusion of women both as researchers and research subjects limited the appropriateness and effectiveness of diagnosis and treatment for women. Experts had the power to focus their attention exclusively on the "70-kilogram man" and pathologize women's bodies as abnormal because they were different from the male "norm" (i.e., framing premenstrual syndrome and menopause as disease). Feminist critique of medical research has influenced research policy and funding, and women's participation in research as subjects and researchers has led to better science. [For example, there is now more understood about women's heart health and how women's symptoms of myocardial infarction (heart attack) are different from men's.]

Scholars who write about the democratization of science focus on access: how can people who do not participate in science access the results of science? There are many vehicles now: public-access science journals, science museums, science festivals, and plain-language talks and podcasts. Another focus has been on civic science: how can people not trained in science contribute to research? Using the internet, researchers have created opportunities for non-scientists to assist them by gathering data in fields as varied as ornithology and astronomy. Citizens have also been able to influence the direction of research through participating in government or foundation-sponsored forums. Increasing access and opportunity are good tools for nurturing a scientifically literate society, but I believe that there are meaningful ways to engage the public in knowledge generation, and thus share access to resources and the power to explain phenomena.

In June 2009, Colleen Reid, Robin LeDrew, and I published Our Common Ground: Cultivating Women's Health through Community-Based Research, a guidebook for fostering research collaborations between academics and non-academics. Community-based research is defined by The Loka Institute as research conducted "by, for, and with the community." The goal of community-based research is to generate knowledge that is relevant to the community in which the research is conducted. Instead of acquiring data from research subjects, researchers can involve participants with any or all stages of the research. This shift brings up many difficult questions about participants' capacity, confidentiality, and attribution, yet what makes community-based research so attractive is that both the process and results from the work will enhance the community and academia.

Community involvement makes research more democratic because the power to explain phenomena is shared with non-academics. Tied to democracy, community-based research also brings up questions of ownership of data and results. In most research agreements with Canadian aboriginal communities, the community owns the data, and decisions regarding dissemination of the results are made in consultation with the community. The consequence is that researchers give up their position of authority as the guardians of knowledge.

I write boldly about opening up knowledge generation to people untrained in science, yet I also see in my own work in physics that the questions I ask are likely too basic to be relevant or interesting to anyone outside of my field. People outside of my field would be unable to contribute to the analysis or interpretation of my work. I wonder, then, whether I am hoarding the power to explain phenomena. How can I remain accountable to the public who funds my work? What accountability is desired?

Clearly, it is to the benefit of science and society to engage the public in supporting and questioning scientific knowledge. But the very engagement unsettles the current boundaries between what is considered valid knowledge and what is not. It is also not clear whether basic research can fit with the ideals of increasing public engagement and democratizing science. I believe the first necessary step in "democratizing" science is recognizing the unique and powerful position scientific thought has in our society as the dominant epistemology, and being willing to struggle with it.

Elana Brief is research scholar National Core for Neuroethics, University of British Columbia. This column was originally published at The Mark News, Canada's online source for news analysis, www.themarknews.com.

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