The Ethics of Gender-Specific Disease

Mary Ann Cutter

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136339066
• Edition: 1
• Topic: Philosophy
• Subtopic: Ethics & Moral Philosophy

Our understanding of gender carries significant bioethical implications. An errant account of gender-specific disease can lead to overgeneralizations, undergeneralizations, and misdiagnoses. It can also lead to problems in the structure of health-care delivery, the creation of policy, and the development of clinical curricula.

In this volume, Cutter argues that gender-specific disease and related bioethical discourses are philosophically integrative. Gender-specific disease is integrative because the descriptive roles of gender, disease, and their relation are inextricably tied to their prescriptive roles within frames of reference. An integrative account of gender-specific disease carries ethical implications because our understanding of gender-specific disease is evaluative, and our evaluations of gender-specific disease entail judgments concerning the praiseworthiness and blameworthiness of a clinical event. Cutter supports a "both/and" emphasis on context and integration in relation to gender-specific disease and bioethical analyses.

While the text mainly focuses on gender-specific diseases that affect women, Cutter also includes examples involving men, children, and members of the LGBT community.

1 Background

INTRODUCTION

This chapter introduces the reader to a philosophical study of the ethics of gender-specific disease. It rehearses key discussions about gender-specific medicine, disease, gender and sex, and women that emerge in this inquiry. It closes with a brief overview of the organization of the study.

WHY STUDY GENDER-SPECIFIC MEDICINE?

Gender-specific, or as some call it sex-specific, medicine is heralded as a “new field of medicine” (Weisfeldt 2004, xiii) and a “new science” (Legato 2004b, xv). It emerges in the late twentieth century as a response to the need to investigate “gender as an important variable [of disease manifestation and treatment] in our research protocols” (Legato 2004b, xv). It studies “the unique aspects of men’s biology as it is to that of women” (Legato 2010b, xxi). There is increased evidence for gender and sex differences in, for instance, coronary artery disease, cardiovascular disease, addiction times, drug metabolism, carcinogenic effects of tobacco smoke, risk of lung cancer, differential HIV viral load and treatment options, and depression (Legato 2004c, 2010b; also see Institute of Medicine 2001a, 2001b; Nobelius and Wainer 2004). There is little disagreement that, among women and men, some diseases have different frequencies (e.g., in the case of lupus, heart disease, and depression), different symptoms (e.g., in the case of acute myocardial infarction, gonorrhea, and AIDS), different diagnoses (e.g., in the case of acute myocardial infarction and AIDS), different prognoses (e.g., in the case of AIDS, heart disease, and lung cancer), and different treatments (e.g., in the case of AIDS, hypothyroidism, and post-traumatic stress disorder) (for numerous other examples, see Nobelius and Wainer 2004; Legato 2004c; Langley 2004). There is growing agreement in the clinical community that there is a need for “a serious focus on gender as a critical and determining factor in understanding human biology, the nature of human disease, and therapy and management both acutely and chronically” (Weisfeldt 2004, xiii).

As an example, consider cardiology. In 2006, heart disease was the leading cause of mortality for women and men in the U.S. Cardiovascular disease took approximately 315,930 women and 315,706 men that year (Heron 2010, 9). Except for perhaps neurologists (Byrne 2004) and pediatricians (Lazarus 2004), no group of clinicians has given more thought to the impact of gender on the experience of disease than cardiologists (Legato 2004a, 183). Physician Jonathan Tobin et al.’s landmark article (1987) brought to cardiologists’ attention differences in the ways cardiologists responded to the complaints of women and men with coronary heart disease (Legato 2004a, 183). A number of research studies in the twentieth century investigating heart disease included only men as research subjects, even though the results concerning the diagnosis of heart disease were applied to women (Dresser 1992). Research showed that women are more likely to exhibit symptoms like shortness of breath and fatigue as indicators of a heart attack compared to men who usually experience the classic chest pain. Today, there has been a large body of literature noting gender-specific differences in normal myocardial anatomy and physiology and in the experience of diseases of the cardiovascular system (Legato and Legha 2004), the different quantitative impact of risk factors for coronary artery disease on women and men (Bassuk and Manson 2004), different features of its clinical course (Roberts 2004), and difference responses to therapeutics (Rosen and Pham 2004).

The past few decades have witnessed significant growth in gender-specific medicine. In 1997, the physician, cardiologist, and researcher Marianne J. Legato founded the Partnership for Women’s Health (2007) at Columbia University in New York City, New York. This partnership was the first of its kind between an academic medical center and the private sector that focused solely on gender-specific medicine. The center, which has since changed its name to the Partnership for Gender-Specific Medicine (Partnership for Gender-Specific A4edicine 2008), is responsible for the publication of the Journal of Gender-Specific Medicine (2008), or as it is called today Gender Medicine (2011). Since then, a number of medical schools have formed programs in gender-specific medicine (Henrich and Viscoli 2006; Glezerman 2010), although many are still marginalized in the large medical centers and there is not yet available a board-certified specialty in the field. The seminal two-volume set entitled The Principles of Gender-Specific Medicine (Legato 2004c) appeared in 2004 and features fourteen areas of study of clinical differences between women and men, including development, central nervous system, cardiology, pulmonology, gastroenterology, reproductive biology, oncology, nutrition, drug metabolism, infectious disease, immunology, rheumatology, aging, and dermatology. A second edition appeared in 2010 (Legato 2010b) and focuses on the essentials of gender-specific disease.

In 1999, the Institute of Medicine, the health arm of the National Academy of Sciences, formed the Committee on Understanding the Biology of Sex and Gender Differences to attend to cataloguing the knowledge on and research priorities for animal and cellular models that could be used to determine when sex and gender differences exist and when they are relevant to biologic functioning at the cellular, physiological, anatomical, developmental, and behavioral levels. In addition, it set out to identify current and potential barriers to the conduct of valid and productive research on sex and gender differences and their determinants, including ethical, financial, sociological, and scientific. It sought to define strategies that can be used to overcome such barriers and promote the acceptance of this research by the scientific community and general public (Moncher and Douglas 2004, 279). In 2001, the Institute of Medicine published its findings in a report entitled Exploring the Biological Contributions to Human Health; Does Sex Matter? (2001a) and provided evidence in support of a biological basis of sex differences in health and disease. Exploring distinguishes between biological sex differences and socially acquired gender differences, reviews evidence for the contribution of biological sex to women’s and men’s health, and calls for an evaluation of the contribution of sex in all biological and health research. In 2001 as well, the Institute of Medicine published Health and Behavior; The Interplay of Biological, Behavioral, and Social Influences (2001b). Health examines the link between health and behavior, the influence of psychological factors or behavior, and the benefits of intervening at different levels to improve individual and population health.

In the Preface to The Principles of Gender-Specific Medicine, Legato defines “gender-specific medicine” as the “study of the differences in men and women’s normal function and in their experience of the same diseases” (Legato 2004b, xv). In the 2010 edition, she defines “gender-specific medicine” as the “study of how the normal function and the experience of disease differs between men and women” (Legato 2010a, xxi). The Partnership for “Women’s Health at Columbia University similarly defines gender-specific medicine as “the science of how normal human biology differs between men and women and how the manifestation, mechanisms, and treatment of disease vary as a function of gender” (Partnership for Women’s Health 2007). One might note that the definitions above share the view that gender-specific medicine attends to how “normal” biological “function” or biology “differs” between the “genders” in the “same” disease, thus highlighting key claims in our understanding of gender-specific disease.

The forthcoming analysis submits the notion of gender-specific disease to philosophical scrutiny. It attends to the meaning of “normal” and “function” and asks whether a biomedical understanding of such notions can adequately account for what is being addressed and treated in gender-specific disease. It considers the challenge of determining “difference” between women and men, and females and males, and asks whether these differences based on biomedical criteria are sufficient to account for what is being investigated. It explores how “gender” and “disease” are understood in gender-specific medicine and how gender is understood as a causal “variable” in disease expression and treatment. Legato herself highlights this central challenge concerning the causal relation between gender and disease when she asks: “[H]ow much … of being ‘male’ and ‘female’ is hardwired into us from conception and evolves inevitably—and how much is plastic, mutable and dependent on where and how we exist? … What’s the consequence of biologic sex and what’s essentially a result of gender [in disease manifestation and treatment]?” (Legato 2004b, xv–xvi). This inquiry hopes to aid in addressing Legato’s query as it maps the philosophical terrain of gender-specific disease.

WHY STUDY DISEASE?

Physician-philosopher Edmund D. Pellegrino recently said that “[i]n light of its unquestioned power to affect human life, clarification of medicine’s basic concepts is as much a moral as an intellectual obligation. Confusion about the nature of health and disease is ultimately confusion about the concept of medicine itself” (2004, xii). In order to avoid confusion in medical theory and practice, Pellegrino recommends philosophical inquiry into major concepts in medicine. Heeding Pellegrino’s suggestions, this inquiry investigates the philosophical terrain of gender-specific disease in order to aid clarification in gender-specific taxonomy and nomenclature.

A study of disease is important because disease is a centralizing notion in health care, one that has direct and important consequences for daily life. How medicine classifies, describes, and explains disease guides medical diagnosis and treatment. It guides what actions are advised to be taken and which ones are not, as well as who is charged with what tasks. If one is diagnosed with lung cancer, for instance, there will be certain avenues of treatment (e.g., chemotherapy) that will be recommended. If one is diagnosed with congestive heart failure, one would not receive treatments recommended for lung cancer but rather receive some other kind of intervention (e.g., minimally invasive heart surgery). For the most part, what one is diagnosed with guides treatment, and what one is treated with reflects what one is diagnosed with.

Further, how medicine classifies, describes, and explains disease evokes the allocation of vast amounts of societal and personal resources. In 2009, the U.S. spent 17.6% of its Gross Domestic Product (GDP) on health care, a figure that translates into $2.5 trillion dollars. In the U.S., Medicare spent 20% of the total of national health expenditure, resulting in $502.8 billion dollars and Medicaid spent 15% of the total of national health expenditure, resulting in $373.9 billion dollars. Private spending constituted 32% of the total national health expenditure, resulting in $801.2 billion dollars. The federal government’s share of health care spending increased just over three percentage points in 2009 to 27%, whereas the share of spending by households (28%), and state and local governments (16%) fell by one percentage point each (Department of Health and Human Services 2010).

Another reason to study disease is to appreciate our historical past (see, e.g., Faber 1923; Garrison 1929; King 1963, 1984; Kraupl-Taylor 1979) and gain insight into directions for future developments. How we understand disease today is a reflection of our past ways of knowing. Eighteenth-century clinician and botanist Carolus Linnaeus (1707–1778) developed a taxonomy of disease that included eleven classes of disease based on clinical signs and symptoms. These included exanthematici (e.g., smallpox), critici (i.e., critical fevers), phlogistici (i.e., inflammations), dolorosi (i.e., painful diseases), mentales (i.e., mental disturbances), quietales (i.e., impairment of voluntary actions), motorii (i.e., convulsive diseases), suppressorii (i.e., suppression of bodily fluids), evacuatorii (i.e., discharge of fluid), deformes (i.e., physical wasting), and vitia (i.e., skin diseases) (Linnaeus, translated in Bowman 1976, 9). These eleven classes of disease reflect how clinicians classified the clinical complaints patients brought to the clinic. Not knowing about viruses, Linnaeus classified rabies as a mental disturbance, and not knowing about vitamin deficiency, he classified rickets as physical wasting (Bowman 1976). Early taxonomies reflect a way to organize patient signs and symptoms into categories that were useful for diagnosis.

In contrast to Linnaeus, in the nineteenth century, cellular pathologist Rudolf Virchow (1821–1902) began to classify disease in terms of anatomic and physiological underpinnings. The early Virchow understood diseases not as “self-subsistent, self-contained entities” (1981 [1858], 188) or invading organisms, but as states indicative of underlying pathophysiological processes. Disease represented “only the course of corporeal appearances under changed conditions” (1981 [1858], 188). For the early Virchow, disease should not be confused with its causes: “Scientific medicine has as its object the discovery of changed conditions, characterizing the sick body or the individual suffering organ. Its object is also the delineation of deviations experienced by the phenomena of life under certain conditions” (1981 [1858], 188). Disease is understood in terms of its pathophysiological processes as deviations from normal bodily conditions, as opposed to patient signs and symptoms.

The transformation of clinical classifications from an enterprise that catalogued patient symptoms to one that organized anatomic and physiological observations and measurements allowed a reorganization of clinical classifications and the diagnoses and treatments that followed. Conditions such as fever and pain were no longer considered diseases in their own right, but symptoms associated with underlying physiological processes that were in turn given a name (e.g., tuberculosis, malaria). Previously discriminated problems (e.g., coughing up blood, shortness of breath) could now be brought together under the same rubric (e.g., tuberculosis). Clinical complaints that had not been discriminated (e.g., pain) could now be distinguished in terms of their anatomical and physiological locations (e.g., hernia, arthritis). These changes in clinical classifications led to the notion that the goals of medicine are not found in the mere reporting of patient signs and symptoms, but rather in comprehending the pathophysiological processes of such reportings (Engelhardt 1982; Foucault 1973 [1963]). Today, it is no wonder that medicine assigns the laboratory a central role in clinical medicine and relies heavily on laboratory tests as opposed to clinical reporting in determining why a patient is ill.

Anatomical and physiological specialties have grown and the number of taxonomies employed by clinicians far exceeds the eleven offered by Linnaeus. The International Classification of Disease, 10^th edition (ICD-10) used today contains approximately twelve thousand categories of disease and serves numerous health care purposes. Disease nosologies no longer involve simple classifications of symptoms and internal pathophysiological processes. They detail a host of ways to explain clinical events defined by:

1. symptomatology—manifestations: known pattern of signs, symptoms, and related findings
2. etiology: an underlying explanatory mechanism
3. course and outcome: a distinct pattern of development over time
4. treatment response: a known pattern of response to interventions
5. linkage to genetic factors: e.g., genotypes, patterns of gene expression
6. linkage to interacting environmental factors (Production of ICD-11: The Revision Process 2007)

Disease entries in ICD-10 are used for numerous purposes, including the analysis of the general health situation of population groups and monitoring of the incidence and prevalence of diseases and other health problems in relation to other variables, such as the characteristics and circumstances of the individuals affected, reimbursement, resource allocation, quality, and guidelines. They are used internationally to classify diseases and other health problems recorded on many types of health and vital records, including death certificates and health records. In addition to enabling the storage and retrieval of diagnostic information for clinical, epidemiological, and quality purposes, they also provide the basis for the compilation of national mortality and morbidity statistics by World Health Organization (WHO) Member States (World Health Organization 1992). The next version of the ICD (11^th edition) is due out in 2015 and is expected to have more than twelve thousand taxonomies of disease (Production of ICD-11: The Revision Process 2007).

In addition to disease being a centralizing notion in medicine, a reason to allocate resources, and a window into the roots of our past, disease is a term that calls out for clarification. There is a sense in which disease and health are related (Engelhardt and Wildes 2003; Murphy 2008). Indeed, health often refers to the absence of disease or illness in situations where the individual does not have a disease, as might be in cases of not having a positive test for tuberculosis or carcinoma of the lung. On this view, either one has a disease or one does not. Yet, as one can well imagine, health may not be that simple. Disease does not always function solely to impair or threaten health. Conditions such as cystic fibrosis and depression are said by some to be products of evolutionary fitness, thereby giving the individual affected a level of advantage in environments where survival would be otherwise challenging. Cystic fibrosis provides heterozygote resistance to cholera and other dehydrating intestinal diseases (Bertranpetit and Calafell 2007); depression allows individuals to conserve energy in stressful environments (Kramer 2005). But further, health may involve more than the absence of disease or a purveyor of evolutionary fitness. It may represent a degree of human function that only few can achieve, as in the case of the standard put forth by the World Health Organization’s 1958 definition of health, namely, “a state of complete physical, mental, and social well-being” (World Health Organization 1958, 459, my italics).

Not only is the distinction between disease and health less than simple, what defines each is nothing short of complex. This inquiry focuses on disease, rather than health, because of western medicine’s heavy reliance on clinical nosology and nosography in guiding and justifying medical diagnosis, prognosis, and treatment. In western allopathic medicine, health serves more as a “default value” (Woodhouse 1997, 330). It “is ‘wh...

Table of contents

• Cover
• Routledge Annals of Bioethics
• Full Title
• Copyright
• Dedication
• Contents
• Preface
• 1 Background
• 2 Gender-Specific Disease: Descriptive Analysis
• 3 Gender-Specific Disease: Prescriptive Analysis
• 4 Gender-Specific Disease: Contextual Analysis
• 5 An Integrative Approach to Gender-Specific Disease
• 6 Rethinking Gender-Specific Disease Nomenclature and Taxonomies
• 7 Toward an Integrative Bioethics
• 8 Integrative Bioethics and Assessing Gender-Specific Disease
• 9 Implications for Health Care for Men, Children, and Members of the LGBT Communities
• 10 Some Lessons and Challenges
• 11 Concluding Reflections
• Bibliography
• Index