Event Title

Objectivity, pathology and risky measures: Biomedical rationality and adherence to HIV care

Presenter Information

Suze Berkhout

Start Date

26-6-2010 1:00 PM

End Date

26-6-2010 2:30 PM

Description

This presentation is part of the Social Values in Medical Research track.

Here again we are back at the basic difference of attitude adopted by sociologists and anthropologists toward their raw material. The statistical sociologist takes it for granted that the truth which he is seeking is contained in his questionnaire answers and that the mathematical technique is capable of revealing that truth...it is in the very nature of questionnaire investigation that the “results” tend to err in the direction of ideal stereotypes. Hence any attempt to investigate, by questionnaire research, the degree of fit between an ideal stereotype and actual practice is a waste of time. (Leach, 1967)

Questioning claims to objectivity, both in terms of its plausibility and presumed value, have become canonical activities within feminist philosophy of science. The continued relevance of the citation from Leach suggests both the historicity and the contemporary pull of this critique; it also hints at the possibility of understanding the ontological and epistemological problematization of an objectivist stance as being intimately connected to an ethical one. Drawing from a range of philosophical literature, including that of Charles Taylor, Bruno Latour and Michel Foucault, as well as fifteen months of qualitative research within an inner city community, I argue that the objectivist models of human activities employed within epidemiology presuppose a clear distinction between description and evaluation, contributing to an understanding of social reality as consisting of brute data. This ultimately misconstrues modes of social relations as individual actions or behaviours, and in so doing contributing to the persistence of harmful social identities, stereotypes and tropes.

By focusing on factors that influence the health of populations, epidemiology provides the foundation of public health and preventive medicine practices. Alan Peterson explains the relationship between epidemiological risk analysis and health services, saying, “epidemiology has become so central to the public health endeavor of identifying, reducing exposure to, or eliminating ‘risks’ that it has become almost synonymous with the public health enterprise itself” (Peterson 1997, p.197). Social epidemiology, a subfield of analytic epidemiology, examines the relationships between broadly defined socio-behavioural and socioeconomic factors and poor health, and is thus a particularly important source of data for surveillance and public health interventions, including those related to HIV/AIDS. Given this fundamental relationship between epidemiology and the public health enterprise, I consider how, within the context of HIV, this relationship between may assist in perpetuating problematic and harmful social identities.

Due to an explosive HIV epidemic in the mid-nineties, the inner city of Vancouver, British Columbia (commonly referred to as the Downtown Eastside) is a highly studied space. The plethora of research surrounding access and adherence to HIV care provides an opportunity to examine the processes by which presumed authority and objectivity within the production of scientific knowledge may confer inadvertent consequences and latent effects. Employing categorizations of barriers to care and risks for non-adherence that are amenable to survey format, studies examine self-regulatory efficacy, medication beliefs, as well as the ability to make certain kinds of projections to the future, i.e. outcome and efficacy expectations. As I examine in this paper, the emphasis on so-called “life skills” can be read as part of the neo-liberal rationality (Peterson, p. 197-198), given the emphasis on self-management; the “unhealthy” body thereby designating an individual who lacks control, responsibility and autonomy. Surveillance measures justify a “will to empower,” and are at once totalizing and individualizing— risk group abbreviations (FSWs, IDUs) cement these subjectivities as a given. The failure of those in the inner city to adequately perform self-managing activities in the course of their HIV care is construed as transgression and deviance, while the resultant pathologies mark them as belonging to a uniform population of similar “kinds” of at-risk caricatures.

Although it has become commonplace in the research community to examine so-called environmental factors in access and adherence studies, more often than not these simply reinforce the notion of the community as itself pathological, leading to an additional source of stigma for residents. Moreover, merely reciting a litany of “structural” barriers, in terms of housing shortages and challenges, quantity of time spent interfacing with the correctional system etc., without engaging in methodologies that move away from individual behaviour and causal explanations, does little to examine the multifarious ways in which different institutions are interconnected, how they must simultaneously be negotiated, or the relationship between daily interpersonal interactions and the norms and ideologies of larger structures—a viewpoint that prioritizes the presumed rationality of a biomedical perspective. While I don’t deny that one’s mental life, living arrangements, and the effects of on-going substance use play a role in antiretroviral adherence, I argue here that the emphasis on individual cognitive components of adherence and proxy measures of “structure” detach the act of ingesting medicines from meanings attached to the act, as well as from the relationships individuals have within the health care system. The rationalizing language employed in the analyses imply a cause-effect relationship between the variables under study—while this may be useful for program and policy advocacy, the analyses nonetheless fail to capture the complexity of adherence as a social phenomena; phenomena that cannot be entirely or even adequately understood through cross-sectional data.

In the context of HIV, an ethical problem emerges. Describing individual actions as “data,” or “fact,” constructs and entrenches transgressive social identities. As Michel de Certeau suggests, with respect to realism and historical analysis, claiming to represent reality camouflages the practices that determine the representation presented (de Certeau, in Scott 1991, p. 777). The oft-cited limitations of cross-sectional study fail to address the rhetorical implications of causal-type explanation and claims to representativeness, particularly when studies suggest that the lack of direction of observation ought to be addressed by creating new prospective cohorts. Given that stigmatization is itself thought to be part of part of the risk environment for HIV and adverse health outcomes, the reliance of public health on methods that unreflexively interpret human action is not only epistemological suspect, it is ethically problematic as well.

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Jun 26th, 1:00 PM Jun 26th, 2:30 PM

Objectivity, pathology and risky measures: Biomedical rationality and adherence to HIV care

This presentation is part of the Social Values in Medical Research track.

Here again we are back at the basic difference of attitude adopted by sociologists and anthropologists toward their raw material. The statistical sociologist takes it for granted that the truth which he is seeking is contained in his questionnaire answers and that the mathematical technique is capable of revealing that truth...it is in the very nature of questionnaire investigation that the “results” tend to err in the direction of ideal stereotypes. Hence any attempt to investigate, by questionnaire research, the degree of fit between an ideal stereotype and actual practice is a waste of time. (Leach, 1967)

Questioning claims to objectivity, both in terms of its plausibility and presumed value, have become canonical activities within feminist philosophy of science. The continued relevance of the citation from Leach suggests both the historicity and the contemporary pull of this critique; it also hints at the possibility of understanding the ontological and epistemological problematization of an objectivist stance as being intimately connected to an ethical one. Drawing from a range of philosophical literature, including that of Charles Taylor, Bruno Latour and Michel Foucault, as well as fifteen months of qualitative research within an inner city community, I argue that the objectivist models of human activities employed within epidemiology presuppose a clear distinction between description and evaluation, contributing to an understanding of social reality as consisting of brute data. This ultimately misconstrues modes of social relations as individual actions or behaviours, and in so doing contributing to the persistence of harmful social identities, stereotypes and tropes.

By focusing on factors that influence the health of populations, epidemiology provides the foundation of public health and preventive medicine practices. Alan Peterson explains the relationship between epidemiological risk analysis and health services, saying, “epidemiology has become so central to the public health endeavor of identifying, reducing exposure to, or eliminating ‘risks’ that it has become almost synonymous with the public health enterprise itself” (Peterson 1997, p.197). Social epidemiology, a subfield of analytic epidemiology, examines the relationships between broadly defined socio-behavioural and socioeconomic factors and poor health, and is thus a particularly important source of data for surveillance and public health interventions, including those related to HIV/AIDS. Given this fundamental relationship between epidemiology and the public health enterprise, I consider how, within the context of HIV, this relationship between may assist in perpetuating problematic and harmful social identities.

Due to an explosive HIV epidemic in the mid-nineties, the inner city of Vancouver, British Columbia (commonly referred to as the Downtown Eastside) is a highly studied space. The plethora of research surrounding access and adherence to HIV care provides an opportunity to examine the processes by which presumed authority and objectivity within the production of scientific knowledge may confer inadvertent consequences and latent effects. Employing categorizations of barriers to care and risks for non-adherence that are amenable to survey format, studies examine self-regulatory efficacy, medication beliefs, as well as the ability to make certain kinds of projections to the future, i.e. outcome and efficacy expectations. As I examine in this paper, the emphasis on so-called “life skills” can be read as part of the neo-liberal rationality (Peterson, p. 197-198), given the emphasis on self-management; the “unhealthy” body thereby designating an individual who lacks control, responsibility and autonomy. Surveillance measures justify a “will to empower,” and are at once totalizing and individualizing— risk group abbreviations (FSWs, IDUs) cement these subjectivities as a given. The failure of those in the inner city to adequately perform self-managing activities in the course of their HIV care is construed as transgression and deviance, while the resultant pathologies mark them as belonging to a uniform population of similar “kinds” of at-risk caricatures.

Although it has become commonplace in the research community to examine so-called environmental factors in access and adherence studies, more often than not these simply reinforce the notion of the community as itself pathological, leading to an additional source of stigma for residents. Moreover, merely reciting a litany of “structural” barriers, in terms of housing shortages and challenges, quantity of time spent interfacing with the correctional system etc., without engaging in methodologies that move away from individual behaviour and causal explanations, does little to examine the multifarious ways in which different institutions are interconnected, how they must simultaneously be negotiated, or the relationship between daily interpersonal interactions and the norms and ideologies of larger structures—a viewpoint that prioritizes the presumed rationality of a biomedical perspective. While I don’t deny that one’s mental life, living arrangements, and the effects of on-going substance use play a role in antiretroviral adherence, I argue here that the emphasis on individual cognitive components of adherence and proxy measures of “structure” detach the act of ingesting medicines from meanings attached to the act, as well as from the relationships individuals have within the health care system. The rationalizing language employed in the analyses imply a cause-effect relationship between the variables under study—while this may be useful for program and policy advocacy, the analyses nonetheless fail to capture the complexity of adherence as a social phenomena; phenomena that cannot be entirely or even adequately understood through cross-sectional data.

In the context of HIV, an ethical problem emerges. Describing individual actions as “data,” or “fact,” constructs and entrenches transgressive social identities. As Michel de Certeau suggests, with respect to realism and historical analysis, claiming to represent reality camouflages the practices that determine the representation presented (de Certeau, in Scott 1991, p. 777). The oft-cited limitations of cross-sectional study fail to address the rhetorical implications of causal-type explanation and claims to representativeness, particularly when studies suggest that the lack of direction of observation ought to be addressed by creating new prospective cohorts. Given that stigmatization is itself thought to be part of part of the risk environment for HIV and adverse health outcomes, the reliance of public health on methods that unreflexively interpret human action is not only epistemological suspect, it is ethically problematic as well.