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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers Health Status of American Indian and Alaska Native Women Barbara W. Lex and Janice Racine Norris Socioculturally distinctive groups exhibit differing behaviors associated with disease and health. Members of a group typically share beliefs about etiologies of diseases and what actions to take in response, or "explanatory models."1 Accordingly, use of medical facilities must be considered in context.2 The decision to seek treatment not only reflects cultural, gender, and individual beliefs about etiology, but also is influenced by the meaning of seeking help. Decisions to use conventional medical, mental health, or substance abuse services also may be influenced by the general availability of such services, perceived barriers to treatment, actual access to resources and equity in services, or coercion. Individuals usually choose among several treatment options and evaluate the importance of various monetary and nonmonetary costs of treatment. Furthermore, a patient may not make an individual choice, but may follow family or community preferences, including use of alternative therapies offered by traditional healers. HISTORICAL FACTORS In contrast to other ethnic minority groups now encompassed within the United States, American Indians and Alaska Natives are descendants of aboriginal peoples who had been in North America for several thousands of years prior to European contact. Archaeologists, physical anthropologists, linguists, and ethnohistorians continue to accumulate knowledge about dates and paths of migrations, which are presumed to stretch from the northeastern portions of Asia, across the Bering Straits, and into the "New World" of the Western Hemisphere.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers Status as the "First Americans" is a matter of considerable pride, and, as indigenous peoples, American Indians and Alaska Natives point to the sophistication and complexity of their societies at the time of European contact. Although some were nomadic hunters and gatherers living in groups of 30 to 100, others were members of more numerous tribal groups of sedentary agriculturalists who tilled fields of domesticated plant foods and had political structures that forged alliances between settlements. Still others were organized into larger and more socially complex groups, with massive ceremonial structures, elaborate artistic motifs, and extensive trade relationships with groups at distances of up to a thousand miles. EARLY IMPACT OF DISEASE AND A LEGACY OF DISTRUST All aboriginal societies had healers who aided the sick, and in such a context distinctions between religious practices and health practices, as understood by most white Americans, are a largely artificial dichotomy. However, these traditional ministrations had little effect on the variety of diseases introduced by Europeans. "Old World" diseases included "smallpox, measles, the bubonic plague, cholera, typhoid, pleurisy, scarlet fever, malaria, yellow fever, diphtheria, mumps, and whooping cough, and probably typhus and syphilis." Epidemics were recurrent, and accompanying them were ''direct and indirect effects of wars (and genocide), enslavements, removals, and relocations, and the destruction of 'ways of life' and subsistence patterns. . . ."3 For example, smallpox had a profound impact on mortality in children under age five, fetal loss and infertility in women, and possibly infertility in men. Depopulation from morbidity and mortality also led to general social disorganization and breakdown in performance of social roles. An epidemic of measles that occurred within the last quarter-century in a South American aboriginal group with no immunity provides a glimpse of deteriorating conditions that occurred in the wake of smallpox (and other) epidemics from the seventeenth to the nineteenth century. Caring for children, obtaining food, tending the sick, and attention to sanitary conditions were sufficiently disrupted to increase morbidity and mortality.4 Previously healthy women and men were so demoralized that many turned their backs, assumed a fetal position in their sleeping hammocks, and awaited death. Native people recognized that diseases followed encroachment of Europeans, and most believed that epidemics were spread deliberately. For example, major smallpox epidemics occurred during the mid-nineteenth centuries, when "missionary barrels" containing clothing and blankets formerly used by persons infected by smallpox ("fomites") were sent to needy and unsuspecting remnants of displaced tribes. Between 1829 and 1833 outbreaks of malaria decimated coastal native settlements from Vancouver southward to California and
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers also those located in the Columbia River basin.5 Other historical factors have promoted mistrust. For example, forced assimilation is a highly sensitive issue. Between 1969 and 1974, 25 to 35 percent of American Indian children were placed in institutions, foster care, or adoptive homes. In 1969, it was reported that 85 percent of Indian children in foster placements were in non-Indian homes. Passage of P.L. 95-608 in 1978 (the Indian Child Welfare Act) now requires placement of children with Indian families through tribal authorities.6 Placement in off-reservation boarding schools began in 1879.7 Both male and female children attended these schools, usually beginning at puberty. Boys were taught to be farmers, girls, to be domestic servants. Use of native languages was discouraged, even during recreation and leisure; all pupils wore uniforms. Garments worn by girls were especially designed to deemphasize feminine characteristics and to protect chastity. No personal adornments were permitted, specifically native crafts and hairstyles. Although young people rebelled against regimentation, these experiences permanently marked their perspectives on Indian-white relations. These affronts to Indian identity are still serious issues. serious issues. RESERVATION LIVING CONDITIONS More than two decades ago a landmark five-year demonstration project disclosed the impact of a comprehensive system of primary care services on a previously underserved remote American Indian community.8 Located near the center of the Navajo Reservation (about 23,000 square miles), Many Farms had a population of about 2,000 persons, most of whom spoke no English. Typically, matrilineal extended families of about 15 persons ("outfits"), comprising an older woman and her husband, their daughters and sons-in-law, and grandchildren, resided in a harsh environment in isolated, poorly ventilated, one-room wood and mud dwellings with dirt floors ("hogans"). About 20 percent of income came from "welfare" sources, and there was a commodities distribution program. Shepherding, odd jobs, weaving, and silver working were major sources of earnings, which for households were $586.00 per year ($147.00 per person) in the early 1960s. Indigenous curers, or medicine men, received respect and much traditional culture was preserved. Tuberculosis and other respiratory disorders were common. Rashes and fly-borne infectious diseases, such as enteric diseases and trachoma, were promoted by the lack of latrines and ubiquity of domesticated animals. Trauma and severe burns, typical in rural areas, were frequent. Chronic diseases included congestive heart failure, gall bladder disease, and arthritis.8 Both the birthrate (4 percent increase per annum, or 45.8 per 1,000) and infant mortality rate (55 percent of deaths occurred in the first year of life) were high, and the median age was 15 years. Thus, Navajos at Many Farms three decades ago exhibited a
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers demographic profile now associated with Third World nations. The closest hospital was 55 miles away, one-half of births occurred at home, and hemorrhagic complication of pregnancy was one of the major health problems of women ages 15 to 44. A handful of public health nurses gave smallpox immunizations in school clinics and otherwise cared for about 10,000 persons dispersed over 4,000 to 5,000 square miles. Primary care physicians were introduced in 1956. Major acute microbial diseases observed during the five-year experiment were pneumonia, diarrhea, otitis media, measles, and impetigo. Only reduction of tuberculosis transmission, decreased incidence of otitis media, and increased referral for hospitalization were attributable to the experiment. The pneumonia-diarrhea complex (cause of about two-thirds of infant deaths) and trachoma (transmitted from child to child by unwashed hands, towels, and utensils) remained serious health problems.8 Thus, it appears that Navajos at Many Farms needed the services of sanitarians and public health nurses before they could reach a juncture at which they could develop diseases usually considered to require medical treatment. CONTEMPORARY HEALTH PROBLEMS AND ASSESSMENT OF NEEDS The 1980 and 1990 Censuses indicate that American Indians and Alaska Natives comprise roughly 1 percent of the U.S. population (about 1.75 million persons).9 They are heterogeneous in tribal origin, preservation of traditions, and extent of urbanization.10,11,12 Indians became citizens in 1924. In 1953, in an effort to decrease unemployment and encourage immersion into the American mainstream, the Bureau of Indian Affairs, a federal agency, began the Urban Relocation Program to resettle Indians from geographically dispersed remote reservations. Target cities included Boston, Chicago, Cleveland, Dallas, Minneapolis/St. Paul, New York, and San Francisco, but job training and employment did not always materialize and many had to rely on public assistance. As a result of relocation, however, less than 50 percent of Indian people now reside on independently governed reservations (often in widely separated areas), and there are about 300 autonomous groups in the United States.10,13 In Alaska, 22 ethnic groups are dispersed in 250 villages, and some reside in or near major cities and towns.14 It would be exceedingly difficult to conduct a national survey of health status of American Indians and Alaska Natives. Appropriate authorities from each tribal entity, or "reservation," included in the sample would need to grant permission.15 To learn about Indian people living in towns or cities, where numbers are comparatively small, an adequate health survey would require local oversampling. Even if these obstacles were overcome, definitions of group
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers membership would arise. Like ''minorities" or "ethnic groups," there is disagreement about criteria for inclusion. The Bureau of Indian Affairs counts individuals who meet legal definitions for registration on tribal rolls, usually quantified by fraction of "blood," with one-fourth to one-eighth minimum as typical. In other instances, persons elect to be known as "Indian" for individual or social reasons, such as intermarriage. For purposes of the United States census, self-identification as American Indian/Alaska Native is adequate.12,16 For survey purposes, however, even the concept of ''household" might not correspond to usage of this term for other minorities. As a consequence, information about Indian health and mental health status is fragmented and uneven in quality.17 Native Americans are not included in the National Health and Nutrition Survey (NHANES) conducted by the National Center for Health Statistics, Centers for Disease Control.18 Most systematic data collection that exists is drawn from patients served by the Indian Health Service (IHS),19 which potentially serves about 1.1 million people.9 Both baseline data and routine monitoring systems are needed to meet federally established health objectives, especially for Healthy People 2000.18 Gaps and limitations have been recognized, and collaboration has begun among the IHS, other federal agencies, and tribal authorities. The Indian Self-Determination and Education Assistance Act of 1975 (P.L. 93-638) established mechanisms that give federally recognized tribes the freedom and power to plan and implement health, educational, and social services. The predominant health problems among American Indians and Alaska Natives now stem from behavioral risk factors directly related to injuries and chronic diseases.20,21Since 1959, the Sanitation Facilities Construction Program of the IHS has improved housing as well as established safe water supplies and adequate waste disposal facilities.22 As might be expected, there are still unmet needs for a variety of interventions and health services for Native Americans both on and off of reservations.19 Common problems for adults include lack of prenatal care, need for access to substance abuse or diabetes treatment, and excess deaths from cigarette smoking and alcohol abuse.23 Problems for adolescents include lack of access to substance abuse or other mental health treatment; deaths from suicide are especially disturbing.24,25,26 Cigarette Smoking Although cigarette smoking among Native Americans has received comparatively little attention, rates are higher than for whites. In 1989, poor school achievement was linked to cigarette use among 31 percent of Indian youth.24 A study of 119 youths on reservations in Washington found 72 percent of those under age 12 used smokeless tobacco at least once a week.27 One study
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers of current use of smokeless tobacco use in adults found rates were highest for Plains Indian men, 15 to 20 percent, in contrast to about 5 percent of white men, increasing the risk of oral cavity cancer. Rates for Indian women ranged between 0 and 2 percent.21 There is considerable variation according to geographic region. In California in 1989, 40 percent of all deaths of both sexes were attributable to cigarette smoking, in contrast to 17.8 percent and 12.4 percent of white men and women, respectively.19 In four regions in 1985 to 1988, current cigarette smoking among Native Americans ranged from 14 to 58 percent of women and 18 to 48 percent of men, in contrast to about 25 percent of both white men and women. Highest rates were found in the Plains region, and a separate study of four Indian communities in Montana during 1987–1989 found current smoking rates of 54.5 percent for women and 50.7 percent for men.21 Smoking cessation programs for Indian women are important, since infant mortality attributed to maternal smoking includes both respiratory disease and sudden infant death syndrome (SIDS).28 Lung cancer mortality rates for Indian women in IHS regional units appear to co-vary with rates of tobacco smoking. Tobacco use also contributes to cardiovascular disease, malignant neoplasms, and cerebrovascular diseases. For cancer mortality, lung cancer is the leading cause of death for women in six out of twelve IHS areas, and exceeds the risk for women in the U.S. general population in four areas. Reduction of tobacco smoking prevalence by 20 percent among American Indians is an objective of Healthy People 2000.29 Obesity Among ethnic groups in the United States, overweight and obesity occur most frequently in American Indians.30 In 1987, the estimated rates of overweight for adult U.S. males and females were 24.1 percent and 25.0 percent, respectively. Rates for American Indian men, 33.7 percent, and women, 40.3 percent, were considerably higher. Among Indian children and adolescents, 24.5 percent of boys and 25 percent of girls were overweight and 11.1 percent of boys and 7.3 percent of girls were obese. For children four years old and under, 11.2 percent were obese (compared to 8.1 percent of U.S. preschool children), with the highest rate for one-year-olds. An ethnographic study of daily dietary intake of 107 Navajo women found 63 percent to be 20 percent overweight.31 Subjects had a mean age of 47 years, had attended school for a mean of six years, and most resided about six miles from a food store. Diets were high in saturated fat and refined carbohydrates and low in fiber and vitamin A. Women who were younger and better educated, planted home gardens, read newspapers, had better housing, lived nearer food stores, and had spent more time off of the reservation had better diets.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers Household income correlated significantly with dietary intake. Another ethnographic study compared diets of obese and nonobese Hualapai women in Arizona.32 Obese women weighed 20 percent or more than desirable weight for height. Subjects were matched for age and percentage of Hualapai ancestry, and were similar in education, income, household composition, marital status, and employment history. Consumption of fat, fiber, and protein did not differ between obese and nonobese women, but obese women consumed more carbohydrates in the form of sweetened soft drinks and alcoholic beverages. High prevalence of obesity in American Indians is related to hypertension, diabetes, coronary artery disease, poor survival rates for breast cancer, increased rates of gallstones, and poor pregnancy outcome.33 Prevalence of obesity has surged within the last half-century,30 and some portion is attributable to the nutritional content of commodity foods distributed to American Indians through feeding programs.33 Other factors include increased employment among women, the availability of refined carbohydrates from convenience stores and fast food restaurants, and sedentary lifestyle.32,33 Among Indians, dietary changes may interact with genetic factors,34 conserving body fat to protect against food shortages. Diabetes Diet and physical activity are important throughout the life cycle. Information available about the prevalence of diabetes mellitus (Type 2 diabetes) among Native Americans shows links with obesity, hypertension, anemia, and nutrient deficiencies.35,36,37 One-third of outpatient visits to the IHS in 1989 were related to diabetes.38 A recent study of 415 Navajos with Type 2 diabetes39 found a ratio of females to males of 1.35 to 1, although clinical findings were remarkably similar for women and men. Both weight reduction and increased exercise are involved in treatment of this chronic disease, although many Indian people are found noncompliant with their treatment regimens. Major studies have focused on the complex interconnection among diet, obesity, diabetes, and pregnancy in Southwestern Indians, especially the Pima tribe. Both genetic and environmental factors are implicated.40,41 Longitudinal studies have shown that Pima adults currently weigh more than at the turn of the century, and that young adults weigh more than their elders. Higher body mass index predicts risk for Type 2 diabetes, which is familial and associated with lower metabolism, and affects about one-half of the Pima people. However, gestational diabetes mellitus is widespread among Native American women and can lead to higher birthweight babies as well as to Type 2 diabetes in mothers.42 In a regional study of behavioral risk factors, about 25 to 35 percent of Native American women (and 25 to 30 percent of Native American men) were found to be overweight (body mass index higher than 27.3 in women and 27.8
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers in men), in contrast to about 16 to 20 percent of white women and 16 to 23 percent of white men.21 Sedentary lifestyle (less than three 20-minute sessions of leisure time physical activity per week) was reported by about 40 to 65 percent of Native American women and 44 to 60 percent of Native American men, and 50 to 60 percent of white men and women.21 In 1989, one study reported that poor health status was linked to overweight and to poor body image among 65 percent of Indian youth.21 A follow-up study of 1,012 diabetic male and female Native Americans in Oklahoma examined mortality rates and causes of death.43 The cohort consisted of 379 men and 633 women diagnosed with non-insulin-dependent diabetes mellitus at baseline during the period 1972–1980. Follow-up was conducted between 1986 and 1989. At that time, 45 percent (452 persons) were deceased, of whom 59 percent were female. Death certificates were obtained and ICD-9 codes analyzed. Major causes of death recorded for the 257 women were circulatory diseases (67 percent), diabetes (26 percent), malignant neoplasms (12 percent), digestive disease (10 percent), and renal disease (6 percent). There was a linear pattern of increased death rates at younger ages, and the ratio of observed to expected deaths for Indian women versus other Oklahoma women was 4.09. Reproductive Health Sexually transmitted diseases are associated with complications of pregnancy. One study tested 968 pregnant Navajo women for Mycoplasma hominis and Chlamydia trachomatis and pregnancy outcome.44 Half of the women (50 percent) had M. hominis and 22 percent, C. trachomatis . Complications of pregnancy included 21 percent with preclampsia, 12 percent with postpartum fever or endometritis, and 8 percent with premature rupture of membranes. Sociocultural assessments rated women for "traditionality" (measured by participation in traditional religion, having undergone a Navaho puberty ceremony, or planning a "Blessing Way" ceremony for the baby). M. hominis combined with a traditional lifestyle strongly predicted postpartum fever, endometritis, and premature rupture of membranes. It was concluded that ''traditionality" could reflect absence of modern conveniences and sanitation or indicate a state of psychological stress associated with the impact of "cultural change.'' Another study found rates of C. trachomatis among 183 pregnant Indian women to be about 25 percent.45 Since perinatal infection can cause inclusion conjunctivitis and pneumonia in newborns, prenatal screening of mothers is encouraged. Further, in this population, Trichomonas tended to be associated with C. trachomatis infection. However, cervical HPV infection rates for
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers American Indian women appear lower than for Hispanics and non-Hispanic white women.46 There is limited information about HIV infection and AIDS prevalence in Indian women.47 In 1991, 14 percent of 292 American Indian adult and adolescent AIDS cases known to the CDC were female.48 Risk factors include intravenous drug use, multiple sex partners, early sexual activity, and alcohol use. Perinatally transmitted AIDS affected eight children under age five.49 In a sample of 481 Indian women in Idaho, Oregon, and Washington,48 6.4 percent were at high risk from intravenous drug use, and 30 percent were in the middle group of persons who had sexual intercourse with two or more partners in the previous year. The greatest proportion of high and middle risk women were ages 12 to 29, and 18 to 49, respectively. Middle risk subjects had begun sexual activity at earlier ages and were younger at first pregnancy. They also reported having sexual partners who resided both on and off reservations, which could facilitate transmission of HIV infection from urban to rural areas, and encourage spread of HIV into small communities. The IHS conducted an HIV seroprevalence survey for the period July 1, 1989, to June 30, 1991.49 Sources were 37,681 blood specimens obtained from persons being evaluated for STD, entering drug and alcohol treatment programs, or receiving prenatal care in the first or third trimester. One per 3,500 initial prenatal patients and one per 1,000 third trimester/perinatal patients were HIV-1 positive. The rate of HIV- 1 infection among patients evaluated for STD was one per 220 males and one per 1,400 females. It was estimated that about 2,300 (range 1,030 to 3,615) men and about 400 (range 180 to 640) women were infected with HIV. During 1990, about 35 infants would have been born to mothers infected with HIV, and, of these, approximately 11 infants would have been infected perinatally. Fetal alcohol syndrome (FAS) and Fetal Alcohol Effects (FAE) have an impact on Native American infants. May found the lowest FAS rates (1.3 per 1,000) occurred for Navajo women.50 A much higher rate occurred among Plains Indian women (10.3 per 1,000), and 25 percent of all Plains women with one FAS child also gave birth to others.50 These findings have prompted local-level studies in other regions. A behavioral risk factor study was conducted at Warm Springs in Oregon in 1990 among persons over age 18.22 Of the 234 women surveyed in this study, a pattern of binge drinking was most typical. Among these women, 60 percent reported blackouts, 42 percent had been arrested for driving under the influence of alcohol, 39 percent had received detoxification treatment, and 25 percent had been enrolled in alcohol treatment at least once. In addition, 31 percent had consumed alcohol during their last pregnancy. From a survey of 429 children who had been younger than age 5 on September 1, 1991, 121 were referred for screening for FAS/FAE because of suspected prenatal alcohol exposure, birthweight less than 3,000 grams, or developmental delay. From this sample,
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers 23 were found to meet two criteria, and 19 were evaluated. A total of eight children, four with FAS and four with FAE, were identified. All mothers were over age 30 and had consumed alcohol during pregnancy (there was no assessment of cigarette smoking, inhalant use, or cocaine use). One mother had two children with FAS. A total of seven of the eight children were in foster placement when assessed. Another comprehensive program targeted 48 high-risk Navajo women, of whom 81 percent participated.51 This program provided alcohol detoxification and family planning services and was hospital based and family oriented, characteristics that seem to have encouraged participation. During the 1970s, sterilization procedures were performed on poor minority women (black, Hispanic, and Native American).52 A General Accounting Office (GAO) investigation has examined allegations of genocide by the Bureau of Indian Affairs and the IHS. In a sample of four out of 12 IHS service areas, 3,406 Native American women were found to have been sterilized during 1973–1976. Of these women, 88.1 percent (3,001) were ages 15 to 44. The IHS now uses protocols to protect patients' rights for both sterilizations,53 and for the depot contraceptive Norplant.53,54,55 Sterilization procedures must be voluntary and accompanied by thorough counseling about risks, benefits, and details of the procedure, as well as information about alternative methods of contraception. Only tubal ligation and vasectomy are acceptable, and hysterectomy is prohibited for purposes of sterilization. Sterilization is prohibited for patients under age 21, patients incapable of giving informed consent (i.e., mentally incompetent), or patients institutionalized in a correctional or mental health facility. Informed consent must be documented, and rules of the Department of Health and Human Services must be followed. These rules require that consent be obtained 30 days prior to the procedure routinely, or after 72 hours has elapsed in the case of emergency abdominal surgery. Consent for sterilization cannot be obtained when a woman is in labor, seeking to obtain an abortion, or under the influence of alcohol or any other mind-altering substance. Care providers are encouraged to seek informed consent during the second trimester of pregnancy to avoid exceeding a 180 day limitation for any specific informed consent signature. Norplant, which now has been used by half a million women in nearly 50 countries, has been available to the IHS since January 1991. A Norplant implant costs $365, which is cost effective for long-term contraception. Generally, Norplant candidates are advised that five years is an optimal time period. Interestingly, Norplant is efficacious because it reduces the amount of cervical mucus and increases its viscosity, creating a barrier preventing migration of sperm through the cervix into the uterus. It inhibits growth of the endometrium and in some patients it suppresses ovulation. The mucus barrier is believed to potentially decrease risk of pelvic infectious disease (PID). High priority patients are women with medical conditions for whom pregnancy might endanger health, women who have recently had an abortion, sexually active teenagers with one
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers or more children, sexually active teenagers (with parental consent) who have plans for career or college education, and women in their twenties who are not ready to contemplate permanent sterilization. Its use is contraindicated in women who are pregnant, have undiagnosed abdominal-uterine bleeding, known or possible breast cancer, thrombo-embolic disease, or liver disease. Other contraindications include migraine headaches, severe obesity, or moderate to severe acne. Norplant is inadvisable for women over age 30, since its use may obscure onset of occult endometrial neoplasia. Any woman planning to have children within four years is advised to seek another contraceptive method. Infant Mortality Infant mortality rates for American Indians are difficult to calculate. Accurate rates depend on identification as American Indian on both birth and death certificates. Several studies have shown that high rates (about 20 percent in some areas) of misclassification occur when births and deaths occur outside of IHS facilities.9 Primary causes of neonatal (first 28 days of life) death are congenital anomalies, respiratory distress syndrome, disorders related to short gestation and low birthweight (less than 2500 grams), SIDS, effects of maternal complications of pregnancy, and infections specific to the perinatal period.9 Primary causes of infant (29 to 365 days of life) mortality are SIDS, congenital anomalies, respiratory distress syndrome, disorders related to short gestation and low birthweight, and pneumonia and influenza.9 It has been estimated that SIDS accounts for 40 percent of postneonatal deaths and 25 percent of infant mortality in Native Americans.56 Infant mortality and neonatal death rates vary across the IHS service areas, with lowest rates in the southwestern states and highest in the northern plains and northwest states.9,57 Infant mortality and neonatal death rates in the Southwest were higher in the past, having improved in recent years, and reflect concerted efforts on the part of the IHS to improve outreach efforts to pregnant women.9,58,59 Special services are provided to young primigravida women,60 since in 1987, 19 percent of all low-birthweight Indian infants were born to mothers under age 20.9 Cancer, Cardiovascular Disease, and Tuberculosis A meta-analysis of cancer incidence rates in American Indians versus the general population61 found reduced incidence of cancer at most sites. Decreased incidence was noted for colon, breast, and uterine cancer. However, increased rates of cervical cancer were observed. Another meta-analysis of cancer incidence in Indian people62 found women to have elevated rates of cancers of the gallbladder, cervix, and kidney, but
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers The IHS Alcoholism and Substance Abuse Program served 25,642 persons in FY 91 and an estimated 37,419 in FY 92 (an increase of about 45 percent).72 In FY 91 there were 5,638 persons treated in inpatient substance abuse programs, and an estimated 6,811 in FY 92 (an increase of about 20 percent). In FY 92, an estimated 200,349 persons received prevention and intervention services. However, no rates for men versus women are available. Alcohol Consumption In the absence of cross-sectional survey data, information from tribal groups or enclaves sketch the parameters of this problem. It should be noted, however, that American Indians and Alaska Natives have attracted disproportionate attention because of reputed excessive alcoholism. One observer stated: "Perhaps no other ethnic group has had more written about their drinking behavior than Native Americans."11 High rates of both heavy drinking and abstinence occur among American Indians.11 May13,73 found that large disparities in consumption rates were claimed for four different reservation groups with reputations for "hard drinking." Compared with the majority of the general U.S. population (67 percent), 52 to 84 percent of all adults on these reservations reported drinking an alcoholic beverage at least once a year. Abstinence was lowest in Ojibwa (16 percent) and Ute (20 percent), followed by Standing Rock Sioux (42 percent), and highest among Navajo (70 percent). The highest alcohol use occurs among men age 16 to 29, and usually diminishes after age 35 or 40, so that 30 to 50 percent of middle-aged male abstainers are former moderate or heavy drinkers.13 However, the number of women who drink may be increasing.11,74 Rural and urban populations also differ. A comparison of 105 Indians of various tribes who lived in Los Angeles with 86 Indians who lived in rural California75 found that the urban Indians were about three times more likely to drink two or more times daily (16.2 percent versus 5.8 percent). However, about 60 percent of reservations officially prohibit alcohol use, and prohibition prompts persons who wish to purchase alcohol to drive long distances to obtain it and to drink while driving.13 The seriousness of alcohol abuse among Native Americans is reflected in rates of alcoholism-related deaths (deaths attributable to alcohol dependence and alcoholic psychoses as well as liver cirrhosis and chronic liver disease specified as alcoholic). In 1987, the death rate for Native Americans was 25.9 per 100,000 in comparison with 6.0 per 100,000 for all Americans.76 Deaths from auto crashes are threefold higher among Native Americans, and an unknown but substantial proportion are alcohol-related.77 In one community almost 10 percent of women (and 20 percent of men) acknowledged driving and drinking.21 In a study of school performance by 13,454 Indian youths in 1989, poor school
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers achievement was linked with weekly-to-daily alcohol abuse among 20 percent of Indian youth.24 Alcohol problems appear to be strongly multigenerational among Native Americans.78 The 1988 National Health Interview Survey (NHIS) consisted of 43,809 interviews with whites, Hispanics, blacks, and Native Americans.79 One purpose of the study was to oversample blacks, but 141 male and 201 female Native Americans were included. Although 36.1 percent of all men and 38.8 percent of all women reported having an alcoholic first-, second-, or third-degree relative, highest percentages were reported by Native Americans: 46.1 percent of men but 62.8 percent of women. Biological Alcohol Susceptibility and Stereotyping Before European contact, few American Indians residing above the Rio Grande River made use of fermented beverages. Beginning in the seventeenth century,80 accounts of explorers and missionaries recorded impressions of intoxication occurring among people who had no experience with wine, brandy, and later, rum. May succinctly summarizes the emergence of commonplace beliefs about the effects of alcohol on Native Americans.13 In the twentieth century, beliefs that "Indians can't hold their liquor" were tested in research laboratories. In the early 1970s, numerous investigators studied hypothesized differences in sensitivity to alcohol and in metabolism of alcohol in various Asian and Native American groups.81,82,83,84,85,86,87,88,89,90 Findings have been carefully reviewed.91 A major premise of such studies is that biological differences in alcohol sensitivity and metabolism may in some way affect vulnerability to alcohol use in certain groups.91,92,93 One hypothesis is that persons with increased alcohol metabolism experience rapidly decreased intoxication and, in turn, increase their consumption, while decreased consumption occurs among persons with decreased alcohol metabolism that results in more persistent intoxication. Increased sensitivity to alcohol is manifested by facial and body "flushing" (peripheral vasodilatation), increased heart rate, decreased blood pressure, diaphoresis, nausea, headaches, diarrhea, general dysphoria, rapid absorption and elimination of alcohol, and rapid increase in acetaldehyde levels.75,91 These responses are primarily exaggerations of the peripheral and internal changes usually produced by alcohol. Intolerance to alcohol may somehow confer protection from alcohol abuse.91 Increased sensitivity to alcohol has been established in Oriental infants and adults.75,87 According to Leland,94 the primary social benefit of identification of increased alcohol sensitivity among American Indians would be an established scientific basis for prevention programs. Nevertheless, evidence for increased alcohol sensitivity in American Indians
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers is equivocal.91,92,94 Fenna and colleagues reported slower rates of alcohol metabolism in Canadian Indians and Inuits than in Caucasian controls.81 Caucasians manifested a significantly faster disappearance rate than the other two groups, but there were no differences in the amounts of alcohol required to produce peak blood levels. Wolff found increased facial flushing in Cree Indians,87 and faster rates of alcohol metabolism occurred in Ojibwa Indians than in Chinese and Caucasian subjects.88 No differences in alcohol metabolism were found in a study comparing American Indians and Caucasians,76 but decreased facial flushing occurred in Tarahumara Indians.89 Hanna found lower levels of increased alcohol sensitivity in subjects from populations related to Asiatic gene pools, namely Eskimos, American Indians, Hawaiians, Indochinese, and persons of mixed Asian ancestry.77 Emerging interest in the genetics of alcoholism has again stimulated investigation of characteristics of Native Americans. Interest in the DRD2 dopamine receptor genotype prompted investigation among Cheyenne Indian men, since their frequency of the DRD2 marker allele is fourfold that of Caucasians.95 Other investigators are examining frequency of alcohol dehydrogenase alleles and family history of alcoholism in Indian men in California.96 Additional studies by this research group focus on family history of alcoholism and administer a challenge dose of 75 ml/kg ethanol to measure effects on heart rate and blood pressure.97 Yet another study examines EEG records of California Indian men with and without a family history of alcoholism in a drug-free state.98 Studies of Indian women are planned under similar experimental protocols. Studies of alcohol sensitivity in American Indians and Alaska Natives require rigorous elicitation of pedigrees in order to establish genetic composition of experimental groups as well as to diminish possible effects of individual differences (cf. notes 92,94). Careful selection and matching of subjects and controls also are necessary, especially since there are differences in body structure, composition, and weight, as well as nutritional status and drinking patterns,91 gender differences in body water distribution,99 and in "first pass" gastric metabolism.100 CURRENT HEALTH CARE NEEDS AND URGENT RECOMMENDATIONS Few American Indians have been included in National Health Interview Surveys. There is a definite need to undertake formal studies of prevalence, incidence, and contributory factors of disease among American Indian groups. To date, health status of American Indians served by the Indian Health Service appears best examined through clinical contacts. However, it also appears important to identify urban areas with large concentrations of Native American peoples in order to conduct appropriate surveys.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers American Indian and Alaska Native women should be involved in development of methods of contraception. As noted, fertility and infant mortality among American Indians have demographic profiles similar to those of Third World nations. That is, there is both a high birthrate and a high infant mortality rate. In addition, some groups of Native Americans have an excess concentration of infants affected by FAS or FAE. The need for contraception to reduce the high birthrate and its complications, the high infant mortality rate, and transmission of alcohol-induced insult to the fetus is apparent. However, more permanent contraceptive methods are associated with ethical concerns. American Indians and Alaska Natives should be considered at risk for HIV infection and AIDS. In early 1992 an article appeared in the Journal of the American Medical Association entitled "The Challenge of Minority Recruitment in Clinical Trials for AIDS."101 In this article, discussions of minority participation focused on African American and Hispanic patients. No mention was made of American Indians, who also are at risk for AIDS. A recent publication by the IHS indicated that rates of gonorrhea, chlamydia, primary and secondary syphilis, and PID exceeded rates for all races.102 In one report published shortly after the JAMA article,103 the number of American Indians infected with HIV was about 2,300 males and about 400 females, and there were about 11 infants with perinatal HIV infection. Rates in urban and rural settings were comparable, an unexpected finding. Yet these findings are likely to underestimate prevalence, since American Indians who had sought HIV testing outside of IHS clinics were not included in the report. Models developed by the IHS clinics should be tested for health care delivery in other settings. Given the seriousness of the AIDS epidemic, specific steps should be taken to increase surveillance and increase education and prevention efforts. Accordingly, sexually active patients are assessed for risk of STDs and HIV, while routine syphilis screening has been instituted for all patients presenting with a possible STD or enrolled in drug and alcohol treatment programs.103 In addition, early treatment, partner notification, and educational and emotional support for those already infected with HIV need to be put in place to prevent transmission to others. Moreover, efforts are under way to prevent racial misclassification of American Indian and Alaska Native persons with HIV infection or AIDS. This is an important concern, given the need for accurate assessments for morbidity and mortality needed for health planning, resource allocation, and deployment of prevention services. Women's voices should be heard. For example, IHS personnel report moral and medical-legal dilemmas associated with alcoholic women. Alcoholic women are at risk for offspring with FAS or FAE. Unfortunately, these same women often cannot reliably use oral contraceptives and have an increased risk for PID if they use an intrauterine contraceptive device. In this instance, ethical concerns and real medical constraints point to the use of Norplant for patients at
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers high risk for STDs or for adverse neonatal outcome. Nonetheless, the attention to ethical concerns reflects sophistication and awareness that is commendable. What is missing from the picture, however, are case studies of women considering tubal ligation or utilizing Norplant. It also is important to obtain the perspective of severely alcoholic women and their attitudes toward high risk pregnancies and resultant insults to the fetus. Similar strategies are needed to obtain perspectives from women who are cigarette smokers, diabetic, or obese, or have sick children. With the cooperation of tribal authorities, urban health centers, and the IHS, American Indian women's stories and needs can be expressed. There is an almost complete lack of both published literature and basic data concerning incidence and prevalence of domestic violence among American Indians. Not only do shelters, hospitals, and substance abuse treatment centers need to be encouraged to collect data, compile statistics, and publish reports, but Native American women need to be brought into planning for education and prevention strategies that can most effectively deal with what anecdotal evidence shows to be a pressing health problem. Participation in research protocols can be influenced by the enthusiasm of the participants. It does not seem likely that a push to enroll large numbers of American Indian women would be successful if they could not see benefits to themselves and others. Risk/benefit calculations often disclose that risks to individuals are outweighed by benefits to society. It appears highly important to enlist cooperation of Indian people in both assessment of their needs and planning research that could ameliorate their own health problems. The example of AIDS risk is particularly compelling. Although there are limited studies, it is interesting to note that the HIV infection rate is comparable in urban and rural areas. This suggests transmission that follows movements of individuals between reservations or rural enclaves and cities. Study of American Indians and AIDS risk appears to present unique factors, but the model that could be developed might have strong implications for other geographically mobile populations. In sum, it seems most appropriate to seek inclusion of women of racial and ethnic groups into research protocols when diseases and disorders of interest are of special concern in their lives. Any risk-benefit analysis should consider whether a disease entity is more prevalent in a specific racial or ethnic population. Oversampling is needed. In the case of Native Americans, their numbers are small but their health problems loom large.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers NOTES 1. A. Kleinman, Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry. 1980, Berkeley, CA: University of California Press. 2. B. W. Lex, ''Review of alcohol problems in ethnic minority groups,'' J. Cons. Clin. Psychol. 55 (1987): 293–300. 3. R. Thornton, T. Miller, and J. Warren, "American Indian population recovery following smallpox epidemics," Am. Anthropol. 93 (1991): 28–45. 4. J. V. Neel, et al., "Notes of the effect of measles and measles vaccine in a virgin-soil population of South American Indians," Am. J. Epidemiol. 91 (1970): 418–429. 5. S. F. Cook, "The epidemic of 1830–1833 in California and Oregon," Univ. Cal. Publ. Am. Arch. and Ethnol. 43 (1955): 303–326. 6. J. A. Kessel and S. P. Robbins, "The Indian Child Welfare Act: Dilemmas and needs," Child Welfare 53 (1984): 225–232. 7. K.T. Lomawaima, "Domesticity in the federal Indian schools: The power of authority over mind and body," Amer. Ethnol. 20 (1993): 227–240. 8. W. McDermott, K. W. Deuschle, and C. R. Barnett, "Health care experiment at Many Farms," Science 175 (1972): 23–31. 9. E. R. Rhoades, et al., "Mortality of American Indian and Alaska Native infants," Ann. Rev. Public Health 13 (1992): 269–285. 10. D. B. Heath, "American Indians and alcohol: Epidemiological and sociological relevance," in Alcohol Use Among U.S. Ethnic Minorities, D. Spiegler, et al. 1989, Washington, DC: U.S. Government Printing Office. Pp. 107–222. 11. J. C. Weibel-Orlando, "Pass the bottle, bro': A comparison of urban and rural Indian drinking patterns," in Alcohol Use Among U.S. Ethnic Minorities, pp. 269–290. 12. R. Bachman, Death & Violence on the Reservation: Homicide, Family Violence, and Suicide in American Indian Populations, 1992, New York: Auburn House. 13. P. A. May, "Alcohol and alcoholism among American Indians: An overview," in Alcoholism in Minority Populations, T. D. Watts and R. Wright, Jr. Springfield, IL: Charles C Thomas. Pp. 95–119. 14. D. Kelso and W. Dubay, "Alaskan Natives and alcohol: A sociocultural and epidemiological review," in Alcohol Use Among U.S. Ethnic Minorities, pp. 223–238. 15. E. R. Oetting and F. Beauvais, "Epidemiology and correlates of alcohol use among Indian adolescents living on reservations," in Alcohol Use Among U.S. Ethnic Minorities, pp. 239–268. 16. D. B. Heath, "Uses and misuses of the concept of ethnicity in alcohol studies: An essay in deconstruction," Int. J. Addict. 25 (1990–91): 607–628. 17. W. A. Vega and R. G. Rumbaut, "Ethnic minorities and mental health," Ann. Rev. Sociol. 17 (1991): 351–383. 18. E. D. Nobmann, K. Strauss, and J. Proulx, "Monitoring, research, and evaluation initiative of the IHS nutrition and dietetics section," The Provider 17 (1992): 85–86.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers 19. C. A. Beckwith, "A report on a model using state data to describe the health status and health care needs of Native Americans in California," The Provider 17 (1992): 102–109. 20. E. R. Rhoades, "The Indian burden of illness and future health interventions," Public Health Report 102 (1987): 361–368. 21. J. R. Sugarman, C. W. Warren, and L. Oge, "Using the behavioral risk factor surveillance system to monitor Year 2000 objectives among American Indians," Public Health Report 107 (1992): 449–456. 22. L. S. Gaynor, "IHS sanitation facilities construction program," The Provider 17 (1992): 217–219. 23. D. Porter, Native Americans' Nutrition and Diet Related Diseases . 1987, Washington, DC: The Library of Congress. 24. R. W. Blum, B. Harmon, and L. Harris, "American Indian-Alaska Native youth health," The Provider 17 (1992): 137–146. 25. N. W. Van Winkle and P. A. May, "Native American suicide in New Mexico, 1957–1979: A comparative study," Hum. Org. 45 (1986): 296–309. 26. P. A. May, "A bibliography on suicide and suicide attempts among American Indians and Alaska Natives," Omega 21 (1990): 199–214. 27. S. P. Schinke, et al., "Native youth and smokeless tobacco: Prevalence rates, gender differences, and descriptive characteristics," in NCI Monograph 8 NIH Publication No. 89-3055, F. I. Gregoric, editor, 1989, Bethesda, MD: National Cancer Institute. Pp. 39–42. 28. M. Bulterys, et al., "The expected impact of a smoking cessation program for pregnant women on infant mortality among Native Americans," Am. J. Prev. Med. 6 (1990): 267–273. 29. B. Leonard, et al., "IHS tobacco project," The Provider 18 (1993): 107–116. 30. Brenda A. Broussard, et al., "Prevalence of obesity in American Indians and Alaska Natives," Am. J. Clin. Nutr. 53 (1991): 1535S–1542S. 31. W. S. Wolfe and D. Sanjur, "Contemporary diet and body weight of Navajo women receiving food assistance: An ethnographic and nutritional investigation," J. Am. Diet. Assoc. 88 (1988): 822–827. 32. N. I. Teufel and D. L. Dufour, "Patterns of food use and nutrient intake of obese and nonobese Hualapai Indian women of Arizona," J. Am. Diet. Assoc. 90 (1990): 1229–1235. 33. T. K. Welty, "Health implications of obesity in American Indians and Alaska Natives," Am. J. Clin. Nutr. 53 (1991): 1616S–1620S. 34. J. V. Neel, "Diabetes mellitus: A 'thrifty' genotype rendered detrimental by 'progress'?" Am. J. Hum. Gen. 14 (1962): 353–362. 35. E. D. Nobmann, T. Byers, and A. P. Lanier, "The diet of Alaska Native adults: 1987–1988," Am. J. Clin. Nutr. 55 (1992): 1024–1032. 36. C. Ritenbaugh, "New approaches to old problems: Interactions of culture and nutrition," in Clinically Applied Anthropology: Anthropologists in Health Science Settings, N. J. Chrisman and T. W. Maretzki, editors. 1982, Dordrecht, Holland, & Boston, MA: D. Reidel Publishing Company.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers 37. L. T. Montour, A. c. Macaulay, and N. Adelson, "Diabetes mellitus in Mohawks of Kahnawake, PQ: A clinical and epidemiologic description," CMAJ 141 (1989): 549–552. 38. H. A. J. Walden, "Reorganizing diabetes clinics to enhance patient involvement and reduce staff stress," The Provider 17 (1992): 92–95. 39. W. Hoy, et al., "Navajo Indians with Type 2 diabetes," The Provider 18 (1993): 41–48. 40. B. W. Howard, C. Gogardus, and E. Ravusin, "Studies of the etiology of obesity in Pima Indians," Am. J. Clin. Nutr. 53 (1991): 1577S–1585S. 41. W. C. Knowler, D. J. Pettitt, and M. F. Saad, "Obesity in Pima Indians: Its magnitude and relationship with diabetes," Am. J. Clin. Nutr. 53 (1991): 1543S–1551S. 42. N. B. Attico, K. C. Smith, and A. G. Waxman, "Diabetes mellitus in pregnancy: Views toward an improved perinatal outcome," The Provider 17 (1992): 153–165. 43. E. T. Lee, et al., "A follow-up study of diabetic Oklahoma Indians," Diabetes Care, Supplement (1993): 300–305. 44. W. T. Boyce, et al., "Sociocultural factors in puerperal infections morbidity among Navajo women," Am. J. Epidemiol. 129 (1989): 604–615. 45. T. A. Cullen, et al., "Chlamydia trachomatic infection in Native American women in a southwestern tribe," J. Fam. Practice 31 (1990): 552–554. 46. T. M. Becker, et al., "Cervical papillomavirus infection and cervical dysplasia in Hispanic, Native American, and Non-Hispanic White women in New Mexico," Am. J. Public Health 81 (1991): 582–586. 47. R. L. Hall, et al., "Assessment of AIDS knowledge, attitudes, behaviors, and risk level of Northwestern American Indians," Am. J. Public Health 80 (1990): 875–877. 48. J. Sugarman, et al., "Tuberculosis among American Indians and Alaska Natives, 1985–1990," The Provider 16 (1991): 186–190. 49. G. A. Conway, et al., "Prevalence of HIV and AIDS in American Indians and Alaskan Natives," The Provider 17 (1992): 65–70. 50. P. A. May, K. J. Hymbaugh, and J. M. Aase, "Epidemiology of fetal alcohol syndrome among American Indians of the Southwest," Soc. Biol. 30 (1983): 374–387. 51. K. B. Masis and P. A. May, "A comprehensive local program for the prevention of fetal alcohol syndrome," Public Health Report 106 (1991): 484–489. 52. R. H. Jarrell, "Native American women and forced sterilization, 1973–1976," Caduceus, Winter (1992): 45–58. 53. B. C. Milligan, "Patient's rights and sterilizations," The Provider 18 (1993): 36–37. 54. M.D. Brown, "Norplant: The newest reversible contraceptive," The Provider 18 (1993): 17–19. 55. W. L. Dienst, "Subdermal contraceptive implants in the IHS: The Crow service unit experience," The Provider 18 (1992): 20–31. 56. G. Brenneman, C. Vanderwagen, and J. Porvaznik, "Infant mortality among American Indian and Alaska Native populations: Successes and challenges," Children Today 19 (1990): 21–25. 57. R. M. Nakamura, et al., "Excess infant mortality in an American Indian population, 1940–1990," JAMA 266 (1991): 2244–2248.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers 58. W. T. Boyce, et al., "Social and cultural factors in pregnancy complications among Navajo women," Am. J. Epidemiol. 124 (1986): 242–253. 59. S. C. Lapham, E. Henley, and K. Kleyboecker, "Prenatal behavioral risk screening by computer among Native Americans," Fam. Med. 25 (1993): 197–202. 60. B. C. Campbell, et al., "Using 1990 National MCH objectives to assess health status and risk in an American Indian community," Public Health Report 104 (1989): 627–631. 61. A. M. Michalek and M. C. Mahoney, "Cancer in native populations: Lessons to be learned," J. Cancer Educ. 5 (1990): 243–249. 62. M. C. Mahoney and A. M. Michalek, "A meta-analysis of cancer incidence in United States and Canadian native populations," Int. J. Epidemiol. 20 (1991): 323–327. 63. E. R. Rhoades, "The major respiratory diseases of American Indians," Am. Rev. Resp. Dis. 141 (1990): 595–600. 64. E. T. Lee, et al., "The Strong Heart Study. A study of cardiovascular disease in American Indians: Design and methods," Am. J. Epidemiol. 132 (1990): 1141–1155. 65. B. V. Howard, et al., "Risk factors for coronary heart disease in diabetic and nondiabetic Native Americans," Diabetes 41 (1992): 4–11. 66. S. H. Nelson, et al., "An overview of mental health services for American Indians and Alaska Natives in the 1990s," Hospital and Community Psychiatry 43 (1992): 257–261. 67. N. W. Van Winkle and P. A. May, "An update on American Indian suicide in New Mexico, 1980–87," Hum. Org. 52 (1993): 304–315. 68. R. D. Walker, et al., "Treatment implications of comorbid psychopathology in American Indians and Alaska Natives," Culture, Medicine and Psychiatry 16 (1993): 555–572. 69. J. L. Shore, et al., "A pilot study of depression among American Indian patients with Research Diagnostic Criteria," Am. Ind. Alaska Native Ment. Health Res. 1 (1987): 4–15. 70. J. D. Kinzie, et al., "Psychiatric epidemiology of an Indian village: A nineteen-year study," J. Nerv. Ment. Dis. 180 (1992): 33–39. 71. R. D. Walker, personal communication, Aug. 30, 1993. 72. T. Burns, "Data abstract—Alcoholism Treatment Guidance System," Aug. 30, 1993. 73. P. A. May, "Substance abuse and American Indians: An overview," Int. J. Addict. 17 (1982): 1185–1209. 74. S. Z. Kunitz, Disease Change and the Role of Medicine: The Navajo Experience. 1983, Berkeley, CA: University of California Press. 75. J. C. Weibel-Orlando, J. Long, and T. S. Weisner, A Comparison of Urban and Rural Indian Drinking Patterns in California. 1982, Los Angeles: Alcohol Research Center, UCLA Neuropsychiatric Institute. 76. Indian Health Service, Trends in Indian Health, 1990. 1990, Rockville, MD: U.S. Department of Health and Human Services. 77. L. J. D. Wallace and R. J. Smith, "Injury prevention in the Indian Health Service: A role for primary care providers," The Provider 17 (1992): 193–198.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers 78. A Hill, "Treatment and prevention of alcoholism in the Native American family," in Alcoholism and Substance Abuse in Special Populations, G. W. Lawson and A. W. Lawson, editors. 1989, Rockville, MD: Aspen Publishers, Inc. Pp. 247–272. 79. T. C. Harford, "Family history of alcoholism in the United States: Prevalence and demographic characteristics," Brit. J. Addict. 87 (1992): 931–935. 80. R. G. Thwaites, Jesuit Relations and Allied Documents 1601–1791 . 1896–1901, Cleveland: Burrows Brothers. 81. D. Fenna, et al., "Ethanol metabolism in various racial groups," Can. Med. Assoc. J. 105 (1971): 472–475. 82. J. A. Ewing, B. A. Rouse, and E. D. Pellizzari, "Alcohol sensitivity and ethnic background," Am. J. Psychiatry 131 (1974): 206–210. 83. L. J. Bennion and T. K. Li, "Alcohol metabolism in American Indians and whites: Lack of racial differences in metabolic rate and liver alcohol dehydrogenase," New Engl. J. Med. 294 (1976): 9–13. 84. J. M. Hanna, "Ethnic groups, human variation, and alcohol use," in Cross-Cultural Approaches to Study of Alcohol, M. W. Everett, J. O. Waddell, and D. B. Heath, editors. 1976, Mouton: The Hague. Pp. 235–242. 85. J. J. Farris and B. M. Jones, "Ethanol metabolism in male American Indians and whites," Alcoholism: Clin. Exp. Res. 2 (1977): 77–81. 86. C. S. Lieber, "Metabolism of ethanol and alcoholism: Racial and acquired factors," Ann. Intern. Med. 76 (1972): 326–327. 87. P. H. Wolff, "Ethnic differences in alcohol sensitivity," Science 175 (1972): 449–450. 88. T. E. Reed, et al., "Alcohol acetaldehyde metabolism in Caucasian, Chinese, and Amerinds," Can. Med. Assoc. J. 115 (1976): 851–855. 89. A. R. Zeiner, A. Paredes, and L. Cowden, "Physiological responses to ethanol among the Tarahumara Indians," Ann. N. Y. Acad. Sci. 273 (1976): 151–158. 90. A. R. Zeiner, A. Paredes, and H. D. Christiansen, "The role of acetaldehyde in mediating reactivity to an acute dose of ethanol among different racial groups," Alcohol: Clin. Exp. Res. 2 (1979): 11–18. 91. N. K. Mello, "Etiological theories of alcoholism" in Advances in Substance Abuse, N. K. Mello, editor. 1983, Greenwich, CT: JAI Press. Pp. 271–312. 92. J. M. Schaefer, "Ethnic and racial variations in alcohol use and abuse," in Special Population Issues. DHHS Publication No. (ADM) 82-1193, NIAAA, editor. 1982, Washington, DC: U.S. Government Printing Office. Pp. 293–311. 93. J. Leland, Firewater Myths: North american Indian Drinking and Alcohol Addiction. 1976, New Brunswick, NJ: Rutgers Center of Alcohol Studies. 94. J. Leland, "Native American alcohol use: A review of the literature," in From Tulapai to Tokay: A Bibliography of Alcohol Use and Abuse among Native Americans of North America, P. D. Mail and D. R. McDonald, editors. 1980, New Haven, CT: HRAF Press. Pp. 1–56. 95. D. Goldman, et al., "DRD2 dopamine receptor genotype, linkage disequilibrium, and alcoholism in American Indians and other populations," Alcohol Clin. Exp. Res. 17 (1993): 199–204.
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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2 - Workshop and Commissioned Papers 96. T. L. Wall, et al., "Alcohol and aldehyde dehydrogenase genotypes and family history of alcoholism," in Proceedings of the Research Society on Alcoholism Annual Meeting. 1993. San Antonio, TX. 97. C. Garcia-Andrade, et al., "Response to alcohol in Native American men with and without a family history of alcoholism," in Proceedings of the Research Society on Alcoholism Annual Meeting. 1993. San Antonio, TX. 98. C. L. Ehlers, et al., "EEG fast frequency activity and alcoholism risk in Native American men," in Proceedings of the Research Society on Alcoholism Annual Meeting. 1993. San Antonio, TX. 99. D. H. Van Thiel and J. S. Gavaler, "Ethanol metabolism and hepatotoxicity: Does sex make a difference?" in Recent Developments in Alcoholism, M. Galanter, editor. 1988, New York: Plenum Press. Pp. 291–304. 100. M. Frezza, C. Di Padova, and G. Pozzato, "The role of decreased gastric alcohol dehydrogenase activity and first-pass metabolism," N. Engl. J. Med. 322 (1990): 95–99. 101. W. El-Sadr and L. Capps, "The challenge of minority recruitment in clinical trials for AIDS," JAMA 267 (1992): 954–957. 102. D. Britten and J. R. Sugarman, "Year 2000 objectives for STDs: the IHS Portland area approach," The Provider 18 (1993): 91–94. 103. G. A. Conway, "Racial misclassification of AI/AN patients with class IV HIV infection," The Provider 17 (1992): 72.
Representative terms from entire chapter: