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Women and Health Research Ethical and Legal Issues of Including Women in Clinical Studies: Volume 2: Workshop and Commissioned Papers (1994) / Chapter Skim
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21 The Inclusion of Latino Women in Clinical and Research Studies: Scientific Suggestions for Assuring Legal and Ethical Integrity
Pages 232-240

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From page 232...
... The purpose of this commentary is to discuss the methodological and conceptual areas relevant to the inclusion of Latino women in research and clinical studies. The main issues in this area have been the limited recognition ofthe importance of the use of racial and ethnic identifiers in investigations, narrow conceptual paradigms, and inappropriate data collection procedures.
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From page 233...
... Thus there remains the central concern that current and future studies may not include sufficient numbers of Hispanic women for subgroup differences to be estimated, a methodological flew rendering study date scientifically end practically unusable.
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From page 234...
... H-HANES is the first large-scale health survey to target the Lmino population in the United States, specifically Mexican Americans, mainland Puerto Ricans, and Cuban Americans. The total sample comprised 12,000 Latinos from the three ethnic subgroups, who lived in three geographic areas (namely, five southwestern states, New York City and its surrounding area, and Dade County, Florida)
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From page 235...
... Data from the H-HANES and national birth data show distinct differences in patterns of clinical outcome by subgroup, that is, Puerto Ricans, Mexican Americans and Cuban Americans (JAMA, 1991~. In addition, there are distinct differences between Mexican immigrants and Mexican Americans.
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From page 236...
... Thus, in the design of a study focusing on Latino women, the investigators must understand that context and work closely with appropriate informants of Mat community so that they can develop appropriate and cross-culturally and linguistically sensitive instruments to collect data, develop appropriate procedures to involve the community, identify representative groups of women in conjunction with community experts, and involve community providers and experts as well as potential subjects in the development and conduct of the study (McGraw et al., 19923. HUMAN PROTECTION PROCEDURES AND INFORMED CONSENT Efforts to develop mechanisms to protect the rights of research subjects have improved dramatically in the last two decades.
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From page 237...
... However, equally important has been the lack of sensitivity of many investigators to issues of Spanish translation and literacy in the translation of instruments and informed consent procedures. A careful review of the Spanish translations of ins ruments and informed consent procedures immediately reveals several problems: almost all are direct translations of the English, which are generally neither culturally nor linguistically appropriate to low-income Latino groups.
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From page 238...
... Thus there may be significant barriers to the assurances of the inclusion of significant number of Latino women and most importantly to the development of ethically sound procedures for their inclusion. Although there has been a clear recognition of the increased racial and ethnic diversity in our society, the scientific community continues to be entrenched in a scientific method that measures homogeneity and ignores the particular life context of communities in which individuals outside the middle class and dominant culture conduct their lives.
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From page 239...
... 5. Assemble interdisciplinary teams so that both qualitative and quantitative methodological approaches can be appropriately used to insure contextual understanding of the community, cross-culturally sensitive instrument development, and scientifically useful data both in terms of scientific knowledge building and policy and program relevance to the community under study.
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From page 240...
... 1988. La Populacion de Puerto Rico y su Trajectoria Historical San Juan: Escuela Graduada de Salud Publica, Recinto de Ciencias Medicas, Universidad de Puerto Rico.
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Key Terms

  • puerto ricans
  • mexican americans
  • socioeconomic status
  • rican women
  • informed consent

  • puerto rican
  • institutional review
  • collection procedures
  • clinical studies
  • ethnic identifiers

  • latino subgroups
  • methodological approaches
  • puerto rico
  • review boards
  • latino population

  • ethical integrity
  • health status
  • psychosocial factors
  • service task
  • comprehensive biopsychosocial

  • disease patterns
  • hispanic health
  • services research
  • nutrition examination
  • minority health

  • include sufficient
  • examination survey
  • african american
  • biopsychosocial model
  • latino health


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