Genetics Health Services Research program of the United Kingdom Department of Health.

I would like to thank my first adviser,Veikko Pietilä, who, a long time ago, first nourished my interest in the philosophy of methods or methodology. I would also thank my peers during the early days of my graduate study in Finland for good discussions and supportive friendship; thanks particularly to Heikki Heikkilä for long discussions and e-mails on Hannah Arendt and dialogue. My interest in methodology became to occupy the centre stage during my doctoral studies at the University of Illinois, Urbana-Champaign. My greatest intellectual debt is to Norman Denzin, who first suggested the idea of this book and has supported it throughout the process. If any of this makes any sense, it is thanks to Norman, whereas all the nonsense is entirely my responsibility. I also want to thank my dissertation committee members, Clifford Christians, C.L. Cole, Lawrence Grossberg and Paula Treichler for sound advice and for introducing me to areas of scholarship, such as dialogism, science studies, and 'materialist' cultural studies, that I had not known before, and that all form a part of this book.Thanks also to John Nerone and Leslie Reagan for introducing me to the study of history, and to Sandra Braman on insights on 'chaos' and to James Hay on insights on 'space'. I greatly enjoyed, as well as benefited from, in an academic sense, the collegiality of my fellow students in Illinois. Special thanks to Lori Reed for her continuing support and witty remarks on everything from feminist politics to connections between Gilles Deleuze and Deepak Chopra. In England I want to thank Annabelle Sreberny for several good discussions and Gillian Youngs for directing me to a couple of sources. I also want to thank James Stanyer for useful editorial comments on the first two chapters.Warm thanks to all my students, who have taught me, particular thanks to Jon Asmundsson and Lina Khatib for being inspiringly good students and for discussions on the 'real'. I am grateful for Terhi Rantanen for phonecalls that have kept me sane, and for providing me with a bed and great company during my visits to the London libraries. In many parts of this book, I keep reminding of the importance of the 'material' aspects of social reality. In this spirit, I want to thank the various institutions and foundations that have made the research that form the basis of this book possible. I want to thank the Academy of Finland, Finland-US Educational Exchange Commission (Fulbright Commission), Finnish Cultural Foundation, Georg and Ella Ehrnrooth Foundation. Thanks also to Scandinavia Foundation, and last, but not least, the Graduate College and Institute of Communications Research at the University of Illinois for funding my doctoral research. I also want to thank the University of Leicester for research leave, which enabled me to complete the first draft of this manuscript. My overall greatest gratitude is to my partner in life, Jouni Paavola, who has read, edited and debated each and every one of the chapters of this book in their various incarnations. I also wa...

BackgroundTargeting sedentary time post exacerbation may be more relevant than targeting structured exercise for individuals with chronic obstructive pulmonary disease. Focusing interventions on sitting less and moving more after an exacerbation may act as a stepping stone to increase uptake to pulmonary rehabilitation.ObjectiveThe aim of this paper was to conduct a randomized trial examining trial feasibility and the acceptability of an education and self-monitoring intervention using wearable technology to reduce sedentary behavior for individuals with chronic obstructive pulmonary disease admitted to hospital for an acute exacerbation.MethodsParticipants were recruited and randomized in hospital into 3 groups, with the intervention lasting 2 weeks post discharge. The Education group received verbal and written information about reducing their time in sedentary behavior, sitting face-to-face with a study researcher. The Education+Feedback group received the same education component along with real-time feedback on their sitting time, stand-ups, and steps at home through a waist-worn inclinometer linked to an app. Patients were shown how to use the technology by the same study researcher. The inclinometer also provided vibration prompts to encourage movement at patient-defined intervals of time. Patients and health care professionals involved in chronic obstructive pulmonary disease exacerbation care were interviewed to investigate trial feasibility and acceptability of trial design and methods. Main quantitative outcomes of trial feasibility were eligibility, uptake, and retention, and for acceptability, were behavioral responses to the vibration prompts.ResultsIn total, 111 patients were approached with 33 patients recruited (11 Control, 10 Education, and 12 Education+Feedback). Retention at 2-week follow-up was 52% (17/33; n=6 for Control, n=3 for Education, and n=8 for Education+Feedback). No study-related adverse events occurred. Collectively, patients responded to 106 out of 325 vibration prompts from the waist-worn inclinometer (32.62%). Within 5 min of the prompt, 41% of responses occurred, with patients standing for a mean 1.4 (SD 0.8) min and walking for 0.4 (SD 0.3) min (21, SD 11, steps). Interviews indicated that being unwell and overwhelmed after an exacerbation was the main reason for not engaging with the intervention. Health care staff considered reducing sedentary behavior potentially attractive for patients but suggested starting the intervention as an inpatient.ConclusionsAlthough the data support that it was feasible to conduct the trial, modifications are needed to improve participant retention. The intervention was acceptable to most patients and health care professionals.Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN) 13790881; http://www.isrctn.com/ISRCTN13790881 (Archived by WebCite at http://www.webcitation.org/6xmnRGjFf)

No abstract

This article asks, "How can we be true to and respect the inner experiences of people and at the same time critically assess the cultural discourses that form the very stuff from which our experiences are made?" To answer this question, the article proposes a quilting mode of doing and writing research that aims to be sensitive to the texture and nuance of personal stories or patches and, by stitching them together, points to discursive resonances between them. The quilting approach is used to make sense of interviews conducted with five anorexic women, listening closely to the voices of these women who are often silenced as disordered, and to illustrate how they complicate and are complicated by notions of anorexics as being too dependent and/or too good.

Genomics researchers and policy makers have accused nutrigenetic testing companies—which provide DNA-based nutritional advice online—of misleading the public. The UK and USA regulation of the tests has hinged on whether they are classed as “medical” devices, and alternative regulatory categories for “lifestyle” and less-serious genetic tests have been proposed. This article presents the findings of a qualitative thematic analysis of the webpages of nine nutrigenetic testing companies. We argue that the companies, mirroring and negotiating the regulatory debates, were creating a new social space for products between medicine and consumer culture. This space was articulated through three themes: (i) how “genes” and tests were framed, (ii) how the individual was imagined vis a vis health information, and (iii) the advice and treatments offered. The themes mapped onto four frames or models for genetic testing: (i) clinical genetics, (ii) medicine, (iii) intermediate, and (iv) lifestyle. We suggest that the genomics researchers and policy makers appeared to perform what Gieryn (Gieryn, T.F. (1983). Boundary-work and the demarcation of science from non-science: strains and interests in professional ideologies of scientists. American Sociological Review, 48, 781–795.) has termed “boundary work”, i.e., to delegitimize the tests as outside proper medicine and science. Yet, they legitimated them, though in a different way, by defining them as lifestyle, and we contend that the transformation of the boundaries of science into a creation of such hybrid or compromise categories is symptomatic of current historical times. Social scientists studying medicine have referred to the emergence of “lifestyle” products. This article contributes to this literature by examining the historical, regulatory and marketing processes through which certain goods and services become defined this way.

Direct-to-consumer (DTC) genetic tests have aroused controversy. Critics have argued many of the tests are not backed by scientific evidence, misguide their customers and should be regulated more stringently. Proponents suggest that finding out genetic susceptibilities for diseases could encourage healthier behaviours and makes the results of genetics research available to the public. This paper reviews the state of play in DTC genetic testing, focusing on tests identifying susceptibilities for lifestyle-related diseases. It will start with mapping the market for the tests. The paper will review (1) research on the content of the online marketing of DTC tests, (2) studies on the effects of DTC genetic tests on customers and (3) academic and policy proposals on how to regulate the tests. Current studies suggest that the marketing of DTC genetic tests often exaggerates their predictive powers, which could misguide consumers. However, research indicates that the tests do not seem to have major negative effects (worry and confusion) but neither do they engender positive effects (lifestyle change) on current users. Research on regulation of the tests has most commonly suggested regulating the marketing claims of the companies. In conclusion, the risks and benefits of DTC genetic tests are less significant than what has been predicted by critics and proponents, which will be argued reflects broader historical trends transforming health and medicine.

Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered "exceptional" and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with fortytwo participants, who had undergone testing for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle.Many participants considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or "in depth" knowledge about one's health and identity but as occasionally relevant surface information, which participants used to make specific health decisions