Choice And Definition Of Problems To Be Studied

The Big Heart Disease Lie

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Many diseases that occur in both sexes have been studied in males only and/or used a male-as-norm approach. Cardiovascular diseases serve as a case in point. Research protocols for large scale studies (MRFIT; Grobbee et al.; Steering Committee of the Physicians' Health Study Group) of cardiovascular diseases failed to assess gender differences. Women were excluded from clinical trials of drugs, they said, because of the desire to protect women or fetuses (and fear of litigation) from possible teratogenic effects on fetuses. Exclusion of women from clinical drug trials was so pervasive that a meta-analysis surveying the literature from 1960 to 1991 on clinical trials of medications used to treat acute myocardial infarction found that women were included in less that 20 percent and the elderly in less than 40 percent of those studies (Gurwitz, Nananda, and Avorn).

Many of these studies, including the Physicians' Health Study, were flawed not only by the factors of gender and age but also by factors of race and class. Susceptibility to cardiovascular disease is known to be affected by lifestyle factors such as diet, exercise level, and stress, which are correlated with race and class. Since physicians in the United States are not representative of the overall male population with regard to lifestyle, the results may not be applicable to most men. The data from these studies should not have been generalized to the population as a whole. (Some argued they directed studies to the group that they care about most, namely, people like themselves.)

Designation of certain diseases as particular to one gender, race, or sexual orientation not only cultivates ignorance in the general public about transmission or frequency of the disease; it also results in research that does not adequately explore the parameters of the disease. Most of the funding for heart disease has been appropriated for research on predisposing factors for the disease (such as cholesterol level, lack of exercise, stress, smoking, and weight) using white, middle-aged middle-class males. Much less research has been directed towards elderly women, African-American women who have had several children, and other high-risk groups of women. Virtually no research has explored predisposing factors for these groups, who fall outside the disease definition established from the dominant perspective.

Recent data indicate that the initial designation of AIDS as a disease of male homosexuals, drug users, and Haitian immigrants not only has resulted in homophobic and racist stereotypes but also has particular implications for women of color. In 1981 the first official case of AIDS in a woman was reported to the Centers for Disease Control and Prevention (CDC). By 1991, $80 million had been spent since the inception of the Multicenter AIDS Cohort Study (MACS), designed to follow the natural history of HIV among gay and bisexual males (Faden, Kass, and McGraw). Although by 1988, the case reports for women were higher than the number for men in 1983, the year the MACS began (Chu, Buehler, and Berelman), it was not until the final quarter of 1994 that the first study on the natural history of HIV infection in women began. In 1998, the CDC reported that AIDS remains the leading cause of death among black females aged 25 to 44, and the second leading cause of death overall among those aged 25 to 44 (CDC, 1998). The majority of women diagnosed with AIDS are black or Hispanic.

These types of bias raise ethical issues. Healthcare practitioners treat the majority of the population, which consists of females, minorities, and the elderly, based on information gathered from clinical research in which women and minorities have not been included. Bias in research thus leads to further injustice in healthcare diagnosis and treatment. Understanding this bias led to changes in policies in the 1990s. Investigators now receiving federal money must give a compelling reason if their studies fail to include both men and women, young and old, as well as individuals of diverse races. Although this increases the cost of research, since the sample must be larger, cost alone does not stand as a compelling reason.

APPROACHES AND METHODS USED IN DATA GATHERING. Using the white, middle-aged, heterosexual male as the "basic experimental subject" not only ignores the fact that females may respond differently to the variable tested; it also may lead to less accurate models even for many men. For example, the standard dosage of certain medications is not only inappropriate for many women and the elderly, but also for most Asian men, because of their smaller body size and weight. Certain surgical procedures such as angioplasty and cardiac bypass result in higher death rates for women (Kelsey) and Asian men and may require modification for the same reason (Chinese Hospital Medical Staff; Manley et al.).

When women of color are used as experimental subjects, clinicians often hold stereotypical and racist views that limit accurate diagnosis. For example, numerous research studies have focused on sexually transmitted diseases in prostitutes in general (CDC, 1987; Cohen et al; Rosser, 1994) and African-American women as prostitutes in particular. Several studies have also revealed that practitioners recognize and report at higher rates crack-cocaine abuse in African-American women and alcohol abuse in American Indian women, compared to white women seeking prenatal care. An American Civil Liberties Union study revealed that in forty-seven out of fifty-three cases brought against women for drug use during pregnancy in which the race of the woman was identifiable, 80 percent were brought against women of color (Pattrow, p. 2).

Frequently it is difficult to determine whether these women are treated disrespectfully and unethically due to their gender or whether race and class are more significant variables. From the Tuskegee syphilis experiment (1932-1972), in which the effects of untreated syphilis were studied in 399 men over a period of 40 years (Jones), it is clear that men who are black and poor may not receive appropriate treatment or information about the experiment in which they are participating. Scholars (Clarke and Olesen) explore the extent to which gender, race, and class become complex, interlocking variables that may affect access to and quality of healthcare.

Using only a particular discipline's established methods may result in approaches that fail to reveal sufficient information about the problem being explored. This may be a difficulty for research surrounding medical problems particularly important to the elderly, women, men of color, and homosexual males. Pregnancy, childbirth, menstruation, menopause, lupus, sickle-cell disease, AIDS, and gerontology represent healthcare issues for which the methods of one discipline are clearly inadequate.

Methods that cross disciplinary boundaries or include combinations of methods traditionally used in separate fields may provide more appropriate approaches. For example, heart disease is caused not only by genetic and physiological factors but also by social/psychological factors such as smoking and stress. Jean Hamilton (1985) has called for interactive models that draw on both the social and the natural sciences to explain complex problems. Some of the biological solutions such as Depo-Provera or Norplant implants (Washburn) favored for addressing teen pregnancy in some African-American and American Indian populations will be less effective without accompanying strategies based upon research from the social and behavior sciences on raising self-esteem, increasing education, and dealing with underlying family dynamics. Stripped of the complex of social, economic, educational, and family dynamics issues that may contribute to teen pregnancy, Norplant implants and Depo-Provera may prevent a particular pregnancy. Without information about family planning, counseling to deal with family problems, and education and job skills, however, such approaches do not solve the basic problems causing the teen pregnancy.

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