Neurogenetic diagnoses: the power of hope, and the limits of today's medicine, by Carole H. Browner and H. Mabel Preloran, London and New York, Routledge, 2010, 152 pp., £24.95 (paperback), ISBN 978-0-415-59256-7
How do genetic tests come to find meaning within the lives of patients and their families? These are the important questions which drive Neurogenetic diagnoses, a thoughtful and empirically rich analysis of genetic testing within the neurology clinic. As Browner and Preloran point out early in their book, in spite of the significant attention given by social scientists to genetics, the analysis of genetic testing in regards to neurological conditions has been little studied. Furthermore, though we might perhaps disagree with the authors' claims that genetics in practice is under-studied, they rightly underscore the curious lack of engagement social scientists concerned with genetics have had with the anthropology and sociology of family life (though, as they stress, there are notable exceptions). Viewing genetics from this analytic vantage point creates a novel perspective through which to examine the shifting articulations of soma and society being made within contemporary biomedicine.
Methodologically, Neurogenetic diagnoses employs longitudinal techniques, including observation at neurological consultations, interviews with neurologists, sequential interviews with patients, and participant observation in homes and other family and neighborhood settings. The dataset is comprehensive, and is drawn from carefully to evidence a nuanced analysis.
The book is divided into three parts: “Searching for answers,” “Coming to terms with devastating prognoses,” and “Caregivers.” Throughout, the authors use particular actors as case studies, quoting from them in sometimes lengthy interview extracts. This creates a sense of intimacy that speaks to the themes of the book. Yet, with such a large sample, one can't help but be curious about the rest of the data – and why particular respondents are selected over others to be the primary empirical foci.
The struggle to access appropriate expertise, the experience of being moved constantly between health professionals, and the sense of desperation these induce, are brought vividly to light in Part I, which tracks patients' attempts to secure concrete diagnoses, and illustrates the effects these have. As Browner and Preloran demonstrate, different kinds of experts paint neurologic symptoms in sometimes dissimilar ways, with varying implications for whether a genetic test is deemed necessary or not. Here we see themes introduced that resonate throughout the book: most evidently, the ambivalence that characterizes tests which neurologists, patients and their families often want, occasionally need, and sometimes resist. Individuals, whose lives may have been deeply affected by neurological symptoms years before a test is considered or obtained, are not necessarily “biological citizens,” defining themselves, their responsibilities and their rights in somatic terms, nor do clinicians necessarily work to construct them as such. As for families, here resistance to genetic testing may be particularly strong, as relatives sometimes thwart patients' attempts to access tests because they “don't want to know” the results.
Medical anthropologist Gay Becker's work is invoked in Part II to examine how patients create order and meaning out of the biographical disruptions that neurological symptoms and genetic tests represent. In particular, Browner and Preloran show how testing is understood by some as one way to produce freedom and control. The analysis here exemplifies the authors' interdisciplinary approach, exploring the dynamic relationship between family life and the pursuit of biomedical knowledge. In particular, we see how families mediate, and are impacted by, genetic testing in diverse ways, as well as the importance of pre-disease identity (especially in terms of position within the family) in shaping post-test behavior and perspectives. Indeed, some of the respondents themselves reflect on this. As such, they offer up a challenge that the authors do not fully take up: what is the specific value of social science when those that participate in research come to similar conclusions as its investigators? Furthermore, while Browner and Preloran clearly demonstrate the utility of Becker's work for interpreting their own findings, the contribution that they make in turn to broader understandings of biosocial disruption across the life-course is perhaps less tangible. This is an example of a broader issue I have with Neurogenetic diagnoses: it is a subtle book, written by scholars with an obvious command of the social science literature on biomedicine; yet, the ways in which it engages with and develops these debates is all too often under-explored. This does, however, ensure that the book is more accessible to clinicians, patients and their families – which I suspect is precisely the point.
In Part III we see the most extensive treatment in Neurogenetic diagnoses on the meanings of testing to patients' families, who often have – as we might expect from the earlier chapters – highly ambivalent responses to genetic tests (including hopes that they will clarify uncertainty, and fears that newfound knowledge will reveal truths that they would rather not confront). We are also, finally, introduced fully to the neurologists and their views. It is clear that these professionals base their decisions on the value of genetic tests in large part on the family and economic circumstances of patients, underscoring the complexities of clinical decision-making, and the polysemy of testing. Until this point, neurologists are somewhat annexed away from the family unit that Browner and Preloran take as their chief focus. However, a more complete analysis of the ways in which medical professionals themselves may become embedded within family life would have furthered the theoretical ambitions of the book, and provided fascinating insights to other anthropologists and sociologists of health and illness. Examining this issue may have also encouraged the authors to turn their analytic lens upon themselves: it is clear that the longitudinal research design, and the specific subject matter under investigation, forged what seem to be on occasion close and intense relationships between Browner and Preloran and their respondents. A few words on how such intimacies were managed as part of the research process and analysis would have made enlightening reading.
Neurogenetic diagnoses is a captivating book, but it is not free of limitations. Aside from some issues highlighted above, the subtitle of the book is perplexing. There are indeed limits to what genetic tests can do for patients, and, in spite of this, hope is evidently an important quality expressed in individuals seeking testing. These are key themes of the book, and ones which are rightly pointed to in its title. Nonetheless, while richly described, the analysis of how hopes are structured, what roles they play in personal, family and clinical life, and how they function within the subjectivity of patients and the economies of biomedicine could have been deeper, and engaged more obviously with some of the social science literature on the promissory. That said, by refusing to move too far into the labyrinths of anthropological and sociological theory, Browner and Preloran have written a book that will speak clearly to the concerns of patients and clinicians, and deserves a wide readership. It is impossible not to be moved by their evocative descriptions of the “everyday burdens of living with neurodegenerative diseases,” and there is obvious scholarly merit to a book which makes the complex synthesis of the anthropology, sociology and psychology of science, medicine, and families seem so effortless. In spite of certain caveats, Neurogenetic diagnoses is a text I am certain I will be referring to again and again.
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