Genetic Counseling Issues in Latinos

Abstract

Close to 12% (33 million) of the U.S. population is of Latino ethnocultural background, and it is estimated by the year 2005 they will become the largest ethnic minority. This article describes the demographic, social, economic, and cultural characteristics of the Latino population in the United States. Main health problems of Latinos and barriers to access to equitable health care are described. Health beliefs of relevance in the provision of health care in general, and of genetic counseling in particular, are reviewed. Some key nuances of genetic counseling to Latinos are discussed, such as the problems of language and other pitfalls in communication, the role of nondirectiveness in Latino culture, the medicalization of pregnancy, the language of prospective risks, and the meaning of disability. To provide culturally appropriate genetic counseling to Latinos, genetic professionals must be conversant with their personal and social history, culture, and traditions. At the same time, cultural stereotyping must be avoided, as the individuality of each patient must be recognized, acknowledged and respected.

The Impact of Acculturation on Awareness of Genetic Testing for Increased Cancer Risk among Hispanics in the Year 2000 National Health Interview Survey

“…In a review of genetic counseling issues in the Hispanic community, language was cited as one of the potential barriers to optimal utilization of genetic counseling and testing services (16). Results of this national survey indicate that acculturation factors, particularly those related to language, may affect awareness of cancer genetics services in the Hispanic community.…”

“…For example, among 10,000 high-risk individuals undergoing mutation testing at a commercial laboratory who specified a single ancestry, the prevalence of BRCA1/2 mutations was 16% among Europeans, 19% among Africans, 18% among Latin Americans/Caribbeans, 14% among Native Americans, and 12% among Asians (15). Whereas review articles and reports emphasize the need for and use of genetic counseling and testing services in the Hispanic community (16)(17)(18), there are less empirical data about factors that may contribute to utilization of these services, such as awareness of their availability (5,19).…”

“…However, awareness of such concepts has been shown to vary by demographic characteristics and family history (21)(22)(23)(24)(25). In minority groups with a significant immigrant population, such as Hispanics, acculturation factors (e.g., primary language spoken, length of residence in the United States) may also influence access to information about genetic testing through the health care system or other dissemination channels (16).…”

The Role of Culture in Health Literacy and Chronic Disease Screening and Management

“…A range of medical domains have begun to address cultural diversity in health care, including nursing [12], genetic counseling [13], health education [14], pediatrics [12], even dentistry [15]. Primary care providers often find themselves trying to (re)shape culturally-determined lifestyles, behaviors and practices (e.g., [16]) as they strive to help patients manage their chronic diseases.…”

Translating Genetics Leaflets into Languages Other Than English: Lessons from an Assessment of Urdu Materials

“…An understanding of differences in ideas about kinship and inheritance, illness causality, and attitudes to prenatal diagnosis is recognized to be important for equitable and effective "cross-cultural communication" in the delivery of genetics services to multiethnic populations (Clarke and Parsons, 1997;Penchaszadeh, 2001;Shaw, 2003a;Weil, 2001). By comparison, there has been little discussion and assessment of current interpreting and translating provision in clinical genetics.…”