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Book Reviews
Smoke Screen: Women's Smoking
and Social Control
Halifax: Fernwood Publishing, 1996; 144 pp; ISBN 1-85727-058-4; $14.95 (CAN) In a thought-provoking analysis of women's tobacco use, Greaves presents a long overdue reference for health professionals and policy makers who must consider smoking as a woman's health issue. The strength of this book is in its Canadian, woman-centred approach to the issue of smoking and tobacco. Integrating strong elements of feminist theory, Greaves brings the reader full circle on the issue of women's smoking by providing information about historical and cultural pressures, the meanings of smoking to women, the uses of smoking for women, the benefits for societies of keeping women smoking and the impact of health and tobacco policy on women's smoking prevention and cessation. Greaves begins her analysis by tracing the historical and cultural influences on women's smoking. In this comprehensive review, the role of women in both smoking and anti-smoking movements is effectively illustrated as is the way in which women's smoking has been largely defined by and compared to men's smoking. This review clearly shows that, over time, smoking has had meanings for women far beyond equality and liberation. To examine such meanings in depth, this text provides a good example of the value of qualitative research and the importance of these methods in researching what smoking means to women. Greaves reports that "women smokers are rarely, if ever, asked for guidance or input in understanding women's smoking, in setting policy or in developing programs"; the research presented in this book synthesizes some of the meanings that smoking has for women. Five themes emerge that summarize these meanings: organizing social relationships, creating an image, controlling emotions, dependency and identity. Unfortunately, this research was conducted on a relatively small group of Canadian and Australian women from specific social groups (namely, feminists, women living in shelters and First Nations women living in Canada's Northern regions) and is thus not representative of all women and their smoking realities. This research nevertheless provides a ground-breaking framework on which future research should be based. Beyond her own research efforts, Greaves boldlydissects the tobacco industry to show how women pay the costs of production and consumption of tobacco. The involvement and role of women in these aspects is multi-faceted and complex with costs that extend far beyond health effects. The book effectively brings these roles alive, presenting women as more than statistics: as workers, as care-givers and as ill and dying smokers. Most importantly, the book uses a stream of tobacco advertisements (from the past and present) directed at women to demonstrate how the tobacco industry has been tremendously responsive to the diversity of contemporary women, more so than traditional health promotion agencies. Echoing the call for more research that responds to the unique relationship of women to smoking, Greaves uses her own qualitative research findings to put forth a theory of women's smoking that addresses current gaps in knowledge about characteristics of smokers and smoking behaviour. Since smoking may be "an important means through which women control and adapt to both internal and external realities," Greaves places women's voices in context and considers how smoking acts as a response to the oppressive experiences of inequality and powerlessness. These experiences form many women's realities of violence, poverty, overwork and discrimination. Smoking clearly becomes a woman's issue. To pursue smoking as a women's issue and a health issue, Greaves advocates for a holistic, "gendered" approach to tobacco cessation and control. Such an approach will address the political, social, psychological and economic issues raised by tobacco use and will view women's smoking behaviour at the societal (rather than individual) level. Because early tobacco cessation messages directed at women (particularly pregnancy-related campaigns) were guilt-inducing and victim-blaming, changes are clearly needed to ensure that future messages are woman-positive and empowering. These changes require that policy makers and stakeholders (including women smokers) at all levels "must acknowledge the importance of women's smoking in managing female experience and broaden their views and concerns accordingly." Clearly, this change requires an interest and understanding of women and smoking. This is a book about women, about women's relationship to smoking. The strength of the book is Greaves' ability to get to the heart of the issue and to provide a blunt account of how smoking mediates women's life experiences and realities. Careful analysis, research and original thought are threaded together by the author's continual challenges and questions for society, health researchers and the health industry. Greaves not only asks us the tough questions needed to effect change in women's relationships to tobacco, but she provides us with the tools to embark on such change and a vision of where we can go.
Methods in Observational Epidemiology,
Second Edition
The first edition of this book, published 10 years ago, had an enormous impact because the authors were among the first to incorporate the concepts and methods of "modern" epidemiology in a text designed for an introductory graduate course. I was eager to see the changes that Kelsey and her colleagues made to the text. The first three chapters, 1) Introduction, 2) Biologic and Statistical Concepts and 3) Sources of Routinely Collected Data on Disease Occurrence, are updated versions of the chapters in the first edition. The same is true for the last six chapters: 10) Cross-Sectional and Other Types of Studies, 11) Epidemic Investigations, 12) Methods of Sampling and Estimation of Sample Size, 13) Measurement Error, 14) Measurement I: Questionnaires and 15) Measurement II: Other Types of Measurement. The authors have expanded the material on sources of information, uses of databases, measurements in the study of the elderly and biologic markers. The middle chapters on the planning, execution and analysis of cohort and case-control studies have been substantially reworked. Chapters 4 and 5 discuss the planning and execution of prospective and retrospective cohort studies, respectively, with additional sections on nested case-control and case-cohort studies in the latter chapter. The statistical analysis of cohort studies has been expanded from one to two chapters, and the chapter on case-control studies has been expanded as well. Chapter 8 covers the design and execution of case-control studies, and Chapter 9 focuses on further design considerations and analysis. Much of the new material is in the expanded sections on statistical analysis. The authors do discuss the statistical concepts and analyses with a greater use of words and examples than statistical formulas. Even so, I think readers would have difficulty following the material unless they have a fairly high level of mathematical literacy or have been formally exposed to multiple regression, logistic regression, proportional hazards models and maximum likelihood estimation in a biostatistical course. The title of the book would be more accurate if it were changed to read "Methods and Analyses in Observational Epidemiology." The text is now more comprehensive and analytical, but this is accomplished at a price. According to a colleague who currently uses the second edition in a graduate course, the second edition is too advanced for use by students at the introductory level. As the authors note, the text does not cover topics such as randomized trials or the emerging field of genetic epidemiology. They discuss the data from insurance plans and health administrative databases and their use in epidemiologic studies, but they do not consider applications of nested case-control and case-cohort studies in pharmacoepidemiology and health services research. Methods for grouped related diseases and measures of co-morbidity and disease severity, which are used for case-mix adjustments in the analysis of health administrative databases, receive little consideration. We now have data from measures of general health status (e.g. Nottingham Health Profile, SF-36, Sickness Impact Profile) and quality of life (e.g. EuroQol, Health Utility Index, Quality of Well-Being Index) reported in population health surveys and studies in Europe and North America, but such measures are not considered. With the emphasis on US data sources and examples, the text does not capture the international scope and breadth of the discipline in terms of information and examples. As in the first edition, the book lacks an author index and the references are at the end of each chapter. As a consequence, the reader has to skim chapters to find references to particular authors and studies. Although there are exercises at the end of each chapter, the answers are not provided. The material on the analysis of studies could be enhanced by including working data sets on a disk. Criticisms aside, the second edition is a solid contribution to the field of epidemiology. Advanced graduate students, particularly those preparing for comprehensive examinations, will find that it captures the required and core content of epidemiology. Practising epidemiologists should have copies of both editions on their shelves for reference and use.
Ethics and Epidemiology
EPI-ETHICS Epidemiologists should adopt the American Express card slogan with respect to this book: "Don't leave home without it." The same is true for any ethicist called upon for assistance in relation to the ethics of epidemiology. Relationship of Epidemiology and Applied Ethics Most non-epidemiologists are likely to be surprised at how new the science of epidemiology is. It emerged in the late 1960s and early 1970s, that is, at about the same time as the field of applied ethics. But, the recognition that these two fields needed to be connected is more recent and can be traced to the late 1980s. The importance of this connection has increased greatly with the advent of molecular epidemiology and information technology. Molecular epidemiology-the use of biological markers including genetic markers to monitor disease-means that people could be forced to live their entire lives with knowledge about the ills that could or will befall them, that no previous generations have faced. The advent of new information technologies vastly increases the potential to misuse information-it raises what have been labelled "modern confidentiality and privacy concerns." The nature of the information that epidemiology now provides has also augmented the importance of the role that it plays in contemporary society and, consequently, the need for ethics in epidemiology. For instance, information relating to ecosystem health can raise critical ethical issues that must be taken into account in societal decision making about protection of the environment. Yet a further reason that specific attention needs to be given to ethics and epidemiology is that this interaction "involves an interplay between the model of public health (protecting the public welfare) and the model of medicine (protecting the welfare of the individual)" [Beauchamp, p 27]. Such conflict raises the most difficult ethical dilemmas. In comparison with decisions faced by other professionals-for example, those in medicine and law whose primary obligation is to the individual-it is not always clear in epidemiology whether the individual or public welfare should predominate when these conflict. Moreover, as is pointed out in the text, even when we have ethics guidelines, which is often a first step toward implementing ethics, not all ethical problems will be solved. Content The book is divided into five parts: foundations; informed consent, privacy and confidentiality; balancing risks and benefits; the study of vulnerable populations; and the regulatory context and professional education. One of the strengths of the text (and occasionally weaknesses from the point of view of repetitiveness) is that the same ethical issues are examined within different contexts. For instance, the moral foundations of the concepts of privacy and confidentiality are discussed by Beauchamp in his excellent chapter on the moral foundations of ethics in epidemiology-an exegesis that could be read with benefit by anyone interested in applied ethics in any context. These concepts are also considered in relation to obtaining informed consent, the protection of research results, balancing risks and benefits, the design of trials and the disclosure of research results, including in particularly sensitive contexts such as AIDS. In general, this focusing of different lenses on the same ethical concept adds to the depth and breadth of the reader's understanding of the concept and its importance. The text is rich in terms of articulating the principles, concepts, modes of analysis and reasoning that can be used to "do ethics" and the issues and questions that need to be addressed to establish a framework within which to investigate the ethics of any particular epidemiologic intervention. In particular, Weed's deeply thoughtful contribution on "Epistemology and Ethics in Epidemiology," despite what might seem a daunting title, merits close attention in these respects. In short, I strongly encourage epidemiologists to study this text in order to obtain the "ethics knowledge" that is an essential substrate for the practice of their profession. Familiarity with this substrate is no longer optional; epidemiologists have ethical obligations to inform themselves in this regard. These obligations arise because, as Schultz concludes, "while epidemiology can do enormous good, ... [there must be] increased legal and ethical accountability" (p 122). While most of the text is reasonably accessible to the intelligent reader who is not trained in applied ethics, a relatively small part of it may prove difficult in this respect. The text will, however, help epidemiologists to recognize when an ethical issue is raised and advise them of when they do not know enough about such an issue to handle it themselves. One needs to have a basic knowledge of ethics to recognize that ethical issues are present and to know when one should not act without ethics advice. Indeed, if the book did no more than this, it would be a major contribution to the fields of both epidemiology and applied ethics. Limitations As always, one can point to limitations in such a text. A major one in this case, although unavoidable, is that the discussion is overwhelmingly focused on the United States, in particular when law and regulatory procedures are examined. This is not entirely unjustified, even if one wants or needs to take a broader perspective on applied ethics than that of the US, as this country's approach influenced the early development of applied ethics in many other post-modern, Western democracies. American sources of applied ethics referred to in the book include US Presidential Commissions, US federal regulations or other laws (especially those governing medical research, food and drug administration, privacy and confidentiality) and professional practice, in particular, requirements for informed consent. These references can alert readers to the need to search for analogous sources in their own countries. The text is also predominantly US-based in another less obvious way. Many of the authors found their ethical analysis on the so-called "Georgetown mantra," the principles of autonomy, beneficence and justice named after the Washington, DC ethicists who first articulated them within the context of applied ethics. There are exceptions, however. For instance, Dr. Levine addresses the current controversy in multinational research between whether we should expect ethical universalism-that is, the same ethical standards across all cultures-or whether we should live with ethical pluralism, recognizing that what counts as justification of epidemiologic interventions can vary substantially in different societies. Difficult Ethical Issues Specific, difficult ethical issues addressed in this text include definitional ones. For example, when is an epidemiologic intervention research or, indeed, is it always research? In the latter case, it would always be subject to the more stringent ethical and legal requirements for conducting research as compared with undertaking standard practice. Or what constitutes risk or minimal risk? The text alerts the reader to certain personal and community risks, such as feelings of guilt or shame and acrimony, that can result from epidemiologic research but are sometimes overlooked. In a similar vein, Schultz points out that the less stringent governance of informational research as compared with research involving physical intervention "manifests a conviction that informational research is less threatening than interventionist research"(p 103). But this can obscure the "risks that informational research can impose." As well, the text makes the reader aware of the special risks to vulnerable populations-children, aged persons, prisoners, people with AIDS and certain ethnic or racial groups-that epidemiologic research can present. Similarly, it is pointed out that it is ethically necessary to be sensitive to ways of reducing harm, in general, in epidemiologic research. For instance, Coughlin, in his chapter on ethically optimized study designs in epidemiology, remarks that in one study "the parents of deceased infants were interviewed within 72 hours of their child's death, most within 24 hours" (p 147), seeking information to be used to explain unexpected child death. From an ethical perspective, it would be very difficult to justify not delaying such interviews. Other ethical difficulties discussed include how to tread the fine line between raising unjustified alarm by disclosure of results and failure to warn when this is ethically required. Emphasis is given to the ethical, not just scientific, requirement of scientific rigour in epidemiologic research. Moreover, the nature of the relationship between the epidemiologist and the persons studied can demand certain conduct on the part of the epidemiologist; for instance, there is a difference in the conduct required in a contractual relationship as compared with a fiduciary one. The fiduciary relationship-that between a physician and patient or a researcher and research subject-imposes a responsibility that "demands loyalty to the interests of the dependent party to the exclusion of the fiduciary's own interests" (p 109). This certainly requires that there be no conflict of interest on the part of the epidemiologist and can mean that full disclosure of personal benefits to the epidemiologist from conducting the study is necessary. Weed points out that we need "to connect methods of ethical reasoning with methods of scientific reasoning"(p 82) and that "the problem central to the practice of epidemiology in which science and ethics are jointly relevant ... is the problem of making public recommendations in the process of causal inference" (p 86). He believes that "the acquisition and use of epidemiologic knowledge appear to be guided as much by the methods of ethical reasoning as by the methods of scientific reasoning" (p 89). It is to be hoped that this is true, in general, and is a very strong reason why epidemiologists need to have more than a passing acquaintance with applied ethics and its theories and concepts. Another difficult ethical issue, and one of the topics in the book given inadequate attention, is that of deception of research subjects. This is addressed (p 117, p 165), but in such a way that it risks misleading people who are not familiar with how to determine the ethical acceptability of deception in proposed research protocols. It is not made clear that there should be a fundamental presumption against the use of deception; that its use can only be justified, if at all, in rare circumstances; and that there is an onus of proof on the person seeking to use deception to justify doing so. Moreover, any such justified use must be surrounded with safeguards and steps taken to ensure that the intrusion involved is the least harmful that is reasonably feasible. For instance, it may be possible to obtain informed consent to not being given all relevant facts, when not to do so constitutes deception- that is, to obtain informed consent to being deceived. And, there must be full debriefing after the research is completed and measures taken to reduce any risks of consequential harm. Yet another difficult ethical issue, and lapse in the text, relates to epidemiologic research with children. Ethical guidelines of other countries covering such research are discussed; however, it is not mentioned that the law in those other countries would also need to be taken into account and, in some instances, would prohibit research on children. Likewise, within the chapter on the study of vulnerable populations, research with dying persons is discussed without sufficient consideration of the great ethical sensitivity that needs to be exhibited in such a context and the very powerful justification that would be needed for involving such people in research. Teaching Ethics in Epidemiology The final strength of the book is that it makes an effort to provide a blueprint for putting its principles into practice. In the last chapter, Goodman and Prineas provide a rationale and proposed course content for an ethics curriculum in epidemiology. Among the reasons for such a course is that "epidemiology is a basic discipline whose security and rigor are essential for the development of an enlightened health policy.... If flawed science is used as a basis for public health policy, it can have adverse health and economic consequences ... lead to wasted public resources ... poorer public health ... [and] it can be characterized as a misappropriation of public funds or a threat to public health" (p 290). Linking epidemiology and bioethics will help to promote "a clear understanding of the values that shape enquiry and of the conflicts engendered by competing values" (p 291). This is important, not just for epidemiologists, but for others such as policy makers, politicians and the public, for whom epidemiologic knowledge is also relevant in decision making. Conclusion In short, there is a major need to consider the ethics of epidemiology in all of its modalities, and Coughlin and Beauchamp's text is a major contribution to this examination. [Previous] [table of Contents] [Next] |
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Last Updated: 2002-10-29 |  |
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