States of Knowledge: Autism, bird flu, and co-production

This week for class we read selected chapters from the book, States of Knowledge: The Co-Production of Science and Social Order, edited by Sheila Jasanoff. It's important to first understand the concept of "co-production" in the context of science and democracy. Jasanoff's co-production is the co-evolution, co-dependency, and obviously co-production of science and social order. This is a useful conceptual tool for studying science, technology, and society because it refuses to cede to technological or social determinism that is present in other social science scholarship. For example, the theories of Thomas Malthus are social determinist because they disregard the human capacity for innovation. More recently, the controversies around eugenics and intelligence testing (as I discussed last week) assume that intelligence is a "natural," or genetically determined, trait. A technologically determinist perspective would be how technology ultimately shapes our society. For example, one might argue that the confluence of highways, automobiles, and fast food restaurants are the cause of obesity in America. But this ignores the social determinants of obesity, and also the social transitions in post-WWII America that co-evolved with a car-centric, processed food-based society.

Jasanoff further separates co-production into two facets: constitutive and interactional. Constitutive co-production helps explain nationhood and legitimacy of knowledge; more simply, what we consider nature and society, and why. Interactional co-production is more concerned with how we know things. This is broadly referred to as "boundary work"- or interactions between science and society/politics. Looking to the Science section of the New York Times, I can easily find articles that resonate with each category. One article describes how "New Definition of Autism Will Exclude Many, Study Suggests." The American Psychiatric Association sets the standards of mental health diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM), with the newest revision causing fears of under diagnosis of autism or autism spectrum disorders. This really clearly demonstrates constitutive co-production, because the DSM definitions of disorders are shaped by both social norms and scientific knowledge. And there are implications for both science and society: presumably, the concern is that people who are not properly diagnosed will miss out on crucial health and social services. The scientific implications are also important: statistics will shift, doctors will change their practices of diagnosis, and new standards are institutionalized.

Another recent article helps demonstrate “interactional” co-production: “Scientists to Pause Research on Deadly Strain of Bird Flu.” As mentioned in the article, an absolute moratorium on research is seldom seen (even with stem cells, research could still continue under private funding). But it seems that cultural differences between America and Europe are playing a part. A Dutch virologist stated, “‘It is unfortunate that we need to take this step to help stop the controversy in the United States’… ‘I think if this were communicated better in the United States it might not have been needed to do this. In the Netherlands we have been very proactive in communicating to the press, politicians and public, and here we do not have such a heated debate.’” It’s funny how the same argument is used about agricultural biotechnology (genetic modification of foods); only switch the positions of the U.S. and Europe. And importantly, the article points out that although we have “never seen the scientific world so polarized, and that led him to urge the researchers to show good faith and flexibility by declaring the moratorium themselves.” This is a clear, although likely unintentional, reference to the idea that science governs itself, rooting back to Michael Polanyi’s “Republic of science,” and that science should be unfettered by government restrictions or impositions. In the realm of post-war science policy, old habits die hard.

Ethics and Science: Climate Adaptation, Bird Flu, and Vaccines

Next week I'm giving my first lecture to undergraduates on "Sustainable Development: Climate Change and the Ethics of Adaptation." I'm trying to narrow down the three main themes I want to get across, while teaching the students something about the nuances of adaptation, resilience, and vulnerability. I'm going to focus on Bangladesh, gender, and agriculture, since I have a background in these things and they make a great case studies. While I'm working on that, take a look at these three science policy blog posts that I really enjoyed this week:

Adaptation or Development? (via the CGIAR's CCAFS blog). This post surprised me at first, because typically this blog promotes straight-up climate-proofing development and technological fixes. It looks like the guest author is a policy researcher. This reminds me of some of the work of Jessica Ayers, a young scholar who I've been reading a lot of lately.

When we think of climate change adaptation in agriculture the first thing that comes to mind is improved crop varieties. Water harvesting and irrigation schemes may also be high on our list. Perhaps too is crop diversification. But on a recent trip to western Kenya, one agricultural community reminded us that sometimes the interventions that can most improve the adaptive capacities of small-scale farmers may not occur on or even near the farm.

Publish or Perish (by my friend Jessie, a Lyman Briggs graduate and medical researcher). Jessie writes about the ethical conundrum in publishing a scientific report about a more virulent strain of bird flu, and the implications for scientific governance.

One result of a global biomedical research field is that there exists no single regulatory body to dictate publication ethics in cases like these. Instead, there is an amalgam of various institutional, professional, local, state, national and international governmental and regulatory bodies which come together to dictate first ethical laboratory practices, allocation of research monies, and finally what happens with research-driven revelations.

The Vaccine Controversy (by Michael, an ASU colleague/my favorite person). This week we brought my former professor, Mark Largent, to ASU's campus where he met with the graduate students and gave a talk on the vaccine debate. Michael's write up hits the key points of his talk, which is about how the vaccine controversy is a case of scientized politics: a very Pielke/Sarewitz-esque argument.

But parents, looking for absolute safety and certainty for their children, aren’t convinced by scientific studies, simply because it is effectively impossible to prove a negative to their standards. A variety of pro-vaccine advocates, Seth Mnookin and Paul Offit among them, have cast this narrative as the standard science denialism story, with deluded and dangerous parents threatening to return us to the bad old days of polio. This “all-or-nothing” demonization is unhelpful, and serves merely to alienate the parents doctors are trying to reach.

Enjoy and have a Happy Thanksgiving!

Experts, Expertise, and Impure Science

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Yesterday we finished our discussion of The Honest Broker by asking ourselves some very provocative questions about the future of science policy advice. We asked questions like, "why is science privileged as a tool in decision-making, and scientists privileged as experts on matters that are often about values?" Involving scientists in policy-making about issues as diverse as breast cancer research to environmental controversies often results in one outcome: "we need more science!" Yet I made the point that we are often operating outside the bounds of "normal science"- this is something that STS scholars have called "post-normal science." The late Stephen Schneider has an excellent explanation of post-normal science with regards to climate policy. Post-normal science is the antithesis of "normal," but it is also the opposite of the ideal of "pure science." And pure science, of course, is often even regarded by scientists to be unachievable in practice. Pure science plays straight into the linear model of science.

So is "impure science" the same as "post-normal science"? We're about to find out. If I had one book to recommend from all of the reading I did last year, it would be Steve Epstein's Impure Science (Amazon, Google books). Epstein’s book is all about how the boundaries between expert and activist become blurred as each shape the other. It's about how a group of AIDS activists worked to challenge the biomedical model of drug testing that required slow, precise double-blind experiments, in order to more rapidly treat AIDS patients with experimental drugs under the "community-based" research model.

The chapters I've read gave brief history of AIDS clinical trials and the associated ethical issues; the emergence of community-based research and the breakdown of expertise and power in medicine; and the landscape of AIDS activism and how activists framed AIDS and their own expertise of the science of AIDS drugs (see also this related article by Epstein). Epstein’s argument is that AIDS activism both produced legitimate results (from community-based research) as well as challenged the structure of FDA regulation, and thus challenged the norms of “pure science.” This, I think, is the perfect example of post-normal science, and what STS scholars call "extended peer communities"- opening the research and decision-making process to non-scientists, including activists, patients, and community health practitioners. The figure above is supposed to show how in cases of post-normal science, the group of experts must be expanded beyond just scientists. I believe that this model could be applied to other issues of health and environmental issues that have high uncertainty and values that need to be reconciled.

If you'd like to read more about experts and activism in environmental controversies, I wrote a paper about it last semester. It's more or less a literature review of STS things, but hopefully you can find some nuggets of sapience.

Bioethics and community dialogues

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Today you get a break from climate change in favor of bioethics. I had the chance to learn from some distinguished bioethics scholars from MSU and the University of Michigan, so I’d like to share some of what I learned!

The theme of today’s “words of wisdom” session was community engagement in genetics policy. We often think of elite scientists and policy-makers as the ones who set health policy, but scholars (including philosophers and social scientists) are increasingly realizing the importance of engaging the public in these science policy issues. This goes beyond just educating the public (remember the “loading dock” model from my last blog?). Some engagement models that I learned about are called “rational democratic deliberation,” “community-based participatory research,” and “community-based dialogues.”

Including community members in a dialogue process about genetic policy was spurred by Francis Collins, who led the Human Genome Project and is now the head of the National Institutes of Health. Collins realized that research on genetics also needed to incorporate the “ethical, legal, and social implications” of this research and how it is used in society. The bioethics researchers at UM and MSU specifically wanted to elucidate some common moral values about reproductive technologies and policies, such as whether genetic testing should be mandatory. First they wanted to hear from a representation of diverse value perspectives on genetic policy, including Right to Life and disability advocates. They held community dialogues on the genetics policy issues and said that even these polarized views has respectful discussions.

Bioethicists are especially aware of the legacy of distrust of genetic research in minority communities, because of past injustices such as the Tuskegee experiments, the eugenics movement, and a more recently uncovered story of Henrietta Lacks. So the bioethicists decided that they didn’t just want diverse interests represented in their discussions; the next step was to bring together communities of color for dialogues. The bioethicists worked with existing African American and Latino community-based organizations (CBOs), and they let the CBOs choose who would participate, where they would hold the sessions, etc. The existing organizational structure of the CBOs also meant that people could more easily decide who and what to advocate once the dialogue sessions were done (the groups actually met with policy-makers in Washington, DC). Information from all of the dialogue sessions was written into academic and policy reports, and community representatives were involved in the writing and review process. A full report of their study is located here, but you need a journal subscription to access it.

One of the great things about these public dialogues about science policy is that people often change their views once they start to consider the complexity of the situation, and to form rational moral values even on highly controversial topics. But there are certainly challenges to this process: issue advocacy and deeply entrenched political polarization can hinder the dialogue process, community dialogue groups can lack legitimacy and credibility in policy settings (or fail to distinguish themselves from other “interest groups”), and especially when working with communities of color, project administrators must be constantly aware of issues of equality between the participants and academic researchers.

The question that I was left with (and that I asked and we briefly discussed) was how to bring this information back to scientists. The community dialogues obviously brought up a lot of discussion about what directions and limits there should be to genetic research: especially with regards to stem cells, cloning, biotechnology and prenatal genetics. It wasn’t really the purpose of this study to bring the dialogue results back to scientists, or to have the community groups involved in shaping scientific agendas, but this seems like an area ripe to explore in the future. “Molding the pipeline into a loop” is a good example of this.

Currently, community members and issue advocates are represented on grant/research review boards and bioethics committees for public research. There is a general faith, even in marginalized communities, that investing in more public research, in combination with government regulations on the limits of research, will result in societal benefits. But some science policy and STS scholars warn about what might happen when advocates don’t see results. What do you think? To apply this to my work with MSU Extension/Kellogg Biological Station, what would happen if we find out that climate models aren’t useful to farmers, or that we can’t solve the problem of climate change using science? This is hypothetical- but we have certainly realized that there are limits to science, unintended consequences, and that stakeholders face a variety of opportunities and constraints in actually using scientific information for decision-making.