05-16-2007 - S208 Week 7

S208 Week 7 16 May 2007       

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intersection where medical sociology meets science/technology studies med sociology still a new discipline within sociology; really only started getting going around 1950s or so science studies a much more recent interdisciplinary field what happens to a disease entity when it goes out into the world? literature trying to crack open the black box of medical knowledge they did this by first leaving medical knowledge alone, deciding to follow medical knowledge or disease entity or “fact” into the world and seeing what happened then they started getting interested in going to the site where medical knowledge was being produced  in doing so, they did ethnographic studies of laboratory science, and they also looked into how a disease entity came about  in doing so, they found that b/c science is such a collaborative endeavor, it is social in its own kind of way  they realized there’s no mythical ivory tower that can be separated cleanly from the rest of society  so then they tried to understand how the laboratory is part of society  there are blurry boundaries between where scientific knowledge is being produced and political ideologies, etc... those were permeating all the time much more recent, really accelerating in the 1990s was an interest in looking at lay knowledges  there was always interest early on in how clinical knowledge fares outside the clinical setting; how lay take up this knowledge  but now a much more symmetrical attitude. symmetrically, we can also analyze how lay knowledge is produced  much more egalitarian attitude toward considering both scientific and lay knowledges as culturally shaped. it wasn’t just a one-way transfer from scientific experts to lay people; it was a back and forth. John: lay knowledge and scientific knowledge have always been more connected than we realize. maybe they’re more naturally coexistent no one part of a binary makes sense without the other maybe it is lay knowledge and scientific knowledge being coproduced going back to fundamental precepts of SI and social constructionism; the meaning of something is never intrinsic unto itself. RSI has no intrinsic meaning. how we act toward it depends on what meaning we assign to it it’s not just a reflection of an “actual reality” Wright and Treacher key assumptions / typology  problematizing notion that disease entity exists out there, autonomously from us, waiting to be discovered

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problematizing the power dynamics not only between medical professionals and patients and families, but also between different kinds of medical professionals explicit move to talk about medical knowledge as professional knowledge. this accomplishes something: it basically says only professionals trained in certain kinds of ways and w/ technical abilities that they acquire are allowed to say something about a phenomenon – in this case, they have the authority to make a claim / say something about disease by calling anything a profession, it does enormous kinds of work for you.. where everyone considers you an authority there is no vaunted status for medicine without diminished status for other [para]professionals when you call something a paraprofession. in general, healing was not seen as a scientific endeavor, b/c people didn’t have a notion of what scientific rationality was about power of binary.. technical skills, etc. constructed medicine and created all the meaning we ascribe to it now back to assumption 1. what was radical about social constructionism about taking up that notion – medicine isn’t self-evident, that boundaries between med, nursing, etc. are fluid, to place something within a jurisdiction is very powerful. this is power of social constructionism in problematizing the taken-for-granted, self-evident nature of medicine and medical knowledge. significant theoretical move. nothing about phenomenon of disease or illness in and of itself that determines whether it’s a medical matter or in another domain assumption 3.  Elena: social context  the second you call something a natural entity, implicitly embedded in that is notion of science, since science has jurisdiction over the natural world.  for constructionists to take on notion that disease is a natural entity occurring autonomously of any social context is very significant  science gains its authority b/c of its method and b/c of what we all accept that method to do assumption 4  what does it mean to be separate from society? what is the significance of claiming they are separate?  John: without the separation, you’re contending medical knowledge can be applicable across societies – universal applicability – which we’ve seen is not the case  the further away from society it is, the more “scientific” a claim becomes. that’s a way in which people contest a claim that somebody is trying to say is scientific. politics is the biggest thing. to the extent you can level that charge and make it stick, that undermines the scientific status of a particular claim. the line between science and society, science and politics, that line is always the line across which those kinds of battles are being fought. that line between what constitutes society, science, bias, experience, subjectivity.. that line was always policed and maintained to the utmost, and it’s all about where that line lies. does it encompass this particular claim or fact or doesn’t it?

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Amy: teach the public about research and what it can and cannot do it’s this issue of what solution is being called for? is the solution a different way of knowing about something, or is it newer and better science? those are very different solutions. empirically when you’re going into a situation. looking at situation the same way Anne Figert looked at the LLPD issue. what exactly is being constructed here, and what are the processes through which that happens? helps you parse out why people behave differently and think differently. science calls for a particular worldview; that’s very different from saying we should assume another (non-science) worldview Beth M: you use a different set of language when you’re talking to the scientific community, or to the media, or to your family, etc. teaching the public about research is a huge project. what actually must happen is scientists need to learn to translate their findings into lay knowledge Cindy: the way information is assimilated and processed is also socially constructed John: science can’t live up to what it led people to believe it could do whose responsibility it is is an important question. scientists in ivory tower, with no accountability for what happens when knowledge goes out in the world.. such positions leave the status of science alone. the definition of the problem here is that the public just doesn’t quite “get it.” then the question is: how can we get them to understand? all of those things leave the scientific status of the knowledge alone. social constructionists who are working in this area – it’s often called the public understanding of science – they pose the question, maybe it doesn’t matter. no matter how well we craft the message and how well people understand it.. maybe it doesn’t matter. maybe it’s not science as a way of knowing that’s going to impact their behavior in a way, b/c other ways of knowing are more important to them. this is actually something very important in medicine. when we take seriously the notion that meanings matter, that the way people think of their disease impacts how they act toward it – if we take this seriously, then maybe all the scientific knowledge in the world isn’t going to impact how they think and behave it’s not an issue that the public doesn’t get it – there are other things that factor in Cindy: snag to that is that policies that affect people re: access and what’s available to them are clearly driven by the assumption that if a fact is scientifically based, then people have to conform for their health last week when we talked about how it’s important to understand what’s implicitly in one’s worldview, the important question is. what kind of actor they believe a human being to be. whole issue of public not getting it, not understanding relative risk.. issues about awareness and knowledge and attitudes and behavior, and those linkages. it’s all based on the notion of rational human actor. given the right info and the right tools, people will do “the right thing” Krista: isn’t there some role for the public health approach? issue of cultural competence. there’s kind of a museum approach, where we say this group over here thinks these kinds of things, and it becomes an overgeneralization that diminishes the very intent of not trying to generalize and assume that the way you think is not the way they think. we’ve discovered this interesting cultural quirk

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about these folks over here, let’s just incorporate that into our model of how to make people healthy. John: upstream vs. downstream, healthy communities Beth: idea people’s behavior determines their health is very American, very downstream Martine: working upstream means bringing politics into the equation, which has historically undermined science Amy: are practitioners the best people to do upstream work? sociology is about making the personal political. something structural going on. it’s all about where these boundaries of expertise lie. when we’re talking about other kinds of things that are not within the purview of a standard biomedical researcher, b/c it’s political, and that implicitly undermines your authority as being scientific. if we buy into that kind of binary, this research isn’t going to happen b/c the very people who have the expertise, who accept this is the way to come to that kind of knowledge, are also going to be the people who aren’t capable of coming up with these bigger, more upstream solutions. it boils down to an issue about expertise, and what is going to be the status of science, and are we going to continue to assert that science is separate from politics. to the extent we do so, we’re going to undermine our ability to fix it and do something about it and understand what’s going on, and we’re going to undermine our ability to implement solutions about it.

how do the readings demonstrate how medical knowledge is being socially constructed? also, comments re: the politics, and the boundaries between what is society and what is science? Martine: there is a relationship between how expertise becomes legitimized and the lived experienced of those implicated by that expertise. Beth T: Brown article Beth M: the only thing people can do given the way our science is constructed today is either to invalidate it or accuse it of bias. contestation of two different sciences where people are resisting the results of a study, the level at which the debate often happens is at the level of science (e.g., the science was flawed). there are many criticisms you can level at the science itself. it doesn’t happen at the level of corporations not wanting to pay. serious implications for what people are able to say in reaction John: popular epidemiology study. lots of shifts happening. people getting better organized. people getting around the various institutional constraints, raising money on their own, grassroots social movements. lot of this is based on the fact that people discovered that traditional forms of knowledge generation were simply ineffective. they weren’t coming up with answers that were reflecting their lived experiences, that supported their reality. the whole idea of and expectations around epidemiology were being reformulated that in part was also part of the professionalization and scientization of epidemiology. that’s how it became a discipline with authority to talk about disease incidence and prevalence. it did that through the application of a certain type of scientific knowledge. do you see a different register in these readings re: the involvement of lay people? Beth T: Arksey article looking at framework by Fleck

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specific historical reasons why it doesn’t seem so bizarre to question medical knowledge Cindy: Brown – scientific knowledge, very clearly downstream. activists more upstream Beth M: community fighting off EPA intervention re: asbestos so that it can maintain its property values (“the EPA is the problem”)  dust outlawed Martine: Figert article John: CVD it’s a particular definition of the problem. it’s not that heart disease is bad and we need to do something about it, or racial disparities are bad and we need to do something about it. it’s a diagnosis. where did these disparities come from? is it their differential health behaviors? what happens in science is you try to strip things down to the barest, so you have a really pure situation with a single cause leading to a single outcome. the lay notion of how the world works is all about the complicated messy stuff. what epidemiologists see as confounding factors, a lot of lay folks say that is part of what is happening. comorbidities or confounding factors are all together part and parcel of the varied effects that race has on our lives that in turn leads to what we see as disproportionate burden of CVD. we control for x, y, and z, but x, y, and z are very much part of the phenomenon we’re examining Link and Phelan article re: fundamental causes. how does that bear on this issue of where can we intervene, and upstream vs. downstream?  messy picture is whole long process of causal processes that mutually reinforce each other or counteract each other  at the end of day, you have sociostructural issues, and issues that have to do with stratification. race. big impact on conditions of life  the fundamental cause argument is that over the long run, it is not going to be efficacious b/c there are these underlying causes that shape this whole slew of complicated mutually reinforcing processes  Beth M: all those other social processes are what we see as outside medicine  who has the authority to speak? we need to deal with this issue of expertise, and who is able to produce knowledge, and who is able to come up with solutions  we’re circumscribing ourselves in ways. group of experts can produce knowledge but they have no authority to execute/conceptualize solutions. maybe we need to problematize boundaries of expertise Wright and Treacher  p. 10 – “This is not the same as a reductionist position which sees medicine as simple, and direct, reflection of some kind of social base. We do not agree, for example, with Navarro when he asserts that what is needed is to reject the assumption that forces and actors within medicine are the main determinants of what happens in that sphere.. that medicine is informed by an ideology which is simply part of the general ‘ideology of capitalism’ and serves ‘an apologist function’”  our project is not about saying that doesn’t go on; our project is more fundamental, in that we’re actually wanting to take on the very production/construction of medical knowledge as inevitably political/social. there is no science that is outside of… it is just embedded within social and cultural considerations. we’re obliterating that binary altogether. Brown article and Figert article. how do these debates and contestations end up?

there’s a way of doing better science. if we got more information about what that entity is and what people are actually experiencing, we would know better whether it belongs in the DSM, or whether some other discipline needs to take it up  b/c of lay participation in the production of epidemiological knowledge, the epidemiological knowledge itself got better, more applicable.. it wasn’t setting itself up for these impossible standards  the social constructionist agenda doesn’t deny that it’s an important part of the project, it’s advocating for a more fundamentally oppositional kind of project  in the controversies they were looking at, that’s the level at which lay knowledge or other ways of knowing – other kinds of claims – it ended up boiling down to ‘we need to know more.’ still, scientific way is one way to know. Figert – boundary between mental disorder, psychological disorder, etc. what are some of the other boundaries being negotiated in these debates?  Beth M: professional boundaries  John: boundaries of personal authority are being renegotiated as well  John: internal boundary too, in case of PMS.. in individual body, what is boundary between chemical, endocrine, physical performance what’s distinctive about scientific vs. lay knowledge, and what types of consequences does that have?  Cindy: legitimacy  why is one seen as more legitimate?  John: lay knowledge has tendency to transform itself more frequently based on lived experiences, based on symbolic interactions. scientific knowledge more structured by nature  Krista: lay knowledge and scientific knowledge travel differently  John: scientific knowledge has designated referees (peer reviewers) with the authority to establish what has credibility  as part of a profession, scientists are producing knowledge knowing that their audience will be other scientists  lay people producing knowledge for themselves  Epstein - emerging hierarchy among lay people  Arksey found there actually is significantly amount of back and forth in support groups’ interactions with professionals, and eventually changing their minds re: RSI  Alyssa: alternate definitions of experts  Woburn case – people really understood science as being inexorably political. false dichotomy to say there’s science on the one side and political on the other. not valueneutral or value-free. its outcomes/results are just what they are. when results leave my purview as scientist, that’s when society takes over.  the standards of proof are vastly different. lay knowledge – what you experience on a day to day basis, that’s the basis of credibility. scientific knowledge – its’ all about the process, and adhering to certain kinds of standards, in order to be regarded as legitimate Figert talks about Joe Gusfield. important point: it’s all about who gets to define the situation. harkens back to fundamental SI proposition – that definitions of the situation matter. and who gets to define the situation.. struggles over the ownership of a problem. who gets to define what the parameters of that problems are. 

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knowledge is power. who gets to define knowledge has a great source of power associated with it very stratified and structural and politicized certain kinds of knowledge have been valorized/promoted over others enormous task to bring alternate forms of knowledge into the fold