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Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2, Workshop and Commissioned Papers (1999)
Institute of Medicine (IOM)

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. "19 Health Status of American Indian and Alaska Native Women." Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 2, Workshop and Commissioned Papers. Washington, DC: The National Academies Press, 1999.

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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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Front Matter (R1-R14)
1 Women's Participation in Clinical Research: From Protectionism to Access (1-10)
2 Women in Clinical Studies: A Feminist View (11-17)
3 Ethical Issues Related to the Inclusion of Pregnant Women in Clinical Trials (I) (18-22)
4 Ethical Issues Related to the Inclusion of Pregnant Women in Clinical Trial (II) (23-28)
5 Ethical Issues Related to the Inclusion of Women of Childbearing Age in Clinical Trials (29-34)
6 Health Consequences of Exclusion or Underrepresentation of Women in Clinical Studies (I) (35-40)
7 Health Consequences of Exclusion or Underrepresentation of Women in Clinical Studies (II) (41-44)
8 Recruitment and Retention of Women in Clinical Studies: Theoretical Perspectives and Methodological Considerations (45-51)
9 Recruitment and Retention of Women of Color in Clinical Studies (52-56)
10 Recruitment and Retention of Women in Clinical Studies: Ethical Considerations (57-64)
11 Impact of Current Federal Regulations on the Inclusion of Female Subjects in Clinical Studies (65-83)
12 Brief Overvew of Constitutional Issues Raised by the Exclusion of Women from Research Trials (84-90)
13 Liability Exposure for Exclusion and Inclusion of Women as Subjects in Clinical Studies (91-102)
14 Liability Exposure When Offspring Are Injured Because of Their Parents' Participation in Clinical Trials (103-112)
15 Compensation for Research Injuries (113-126)
16 Justice and the Inclusion of Women in Clinical Studies: A Conceptual Framework (127-150)
17 Women's Representation as Subjects in Clinical Studies: A Pilot Study of Research Published in JAMA in 1990 and 1992 (151-173)
18 Racial Differentials in Medical Care: Implications for Research on Women (174-191)
19 Health Status of American Indian and Alaska Native Women (192-215)
20 Ethical and Legal Issues Relating to the Inclusion of Asian/Pacific Islanders in Clinical Studies (216-231)
21 The Inclusion of Latino Women in Clinical and Research Studies: Scientific Suggestions for Assuring Legal and Ethical Integrity (232-240)
Appendix: Author Biographies (241-248)