This chapter explores the perspectives on genetics and ethics of the fastest growing population in the United States, the peoples of the Hispanic and Latino community. It examines their unique demographics and basic cultural values. In addition, the importance of cultural assessments when interfacing with this population and its diverse ethnicities and racial designations is highlighted. This chapter also includes trends, recommendations, and ways to prepare healthcare providers for care of these patients and families.

The cultural background of the Hispanic/Latino population has a significant influence on their perspectives on genetics and ethics. These perspectives have been given very little attention to date by healthcare providers. Understanding diversity, particularly those variations among Hispanic/Latino populations (hereafter refer to as Hispanic, to be consistent with Census Bureau nomenclature) with regard to genetics and ethics, is of major importance when providing health care to meet the needs of this growing community.

In 2007 the Census Bureau released news indicating that Hispanics remained the largest minority group in the United States, followed by Black or African American, Asian, American Indian or Alaskan Native, and Native Hawaiians or Other Pacific Islander. Moreover, Hispanics are the fastest-growing minority group in the United States, followed by Asians (Guzmán 2001). In view of these demographic changes, it is imperative that healthcare providers increase their level of cultural sensitivity and awareness. This awareness may help to better serve this group, and an understanding of the perspectives that these populations have on genetics is pivotal in providing effective genetic care.

The term Hispanic historically denotes a relation to Spanish-speaking people from the two hemispheres. It is derived from the Latin word Hispanicus, from Hispania, Spain. Conversely, the term Latino refers to people or communities of Latin American origin and has been used interchangeably with Hispanic (American Heritage Dictionary 2000). In accordance with guidelines from the Office of Management and Budget, race and Hispanic origin are two different concepts, in contrast to what the media, researchers, and some organizations view (OMB 1997). Many use Hispanic origin and race as one concept, and these terms are often applied inconsistently. A person from this community can be of Hispanic ethnicity (examples include such designations as White-Hispanic, Non-White-Hispanic, Black-Hispanic, Asian-Hispanic, American Indian-Hispanic, or Native American-Hispanic), or in many cases racially mixed.

When applying genetic and genomic health care and research to the Hispanic populations, special challenges may pose limitations. The definition of racial or ethnic structure in human populations is one example. Researchers have stated that race has a geographical connotation and ethnicity takes into consideration cultural, physical, and some genetic characteristics (Burchard et al. 2003; Mao et al. 2007). On the other hand, patterns of mating and reproduction are taken into consideration when it relates to the genetic structure of human populations (Burchard et al. 2003). Biological and genetic implications are derived from these racial and ethnic differences.

The genetic admixtures within this population pose another challenge to consider when conducting population studies. A particular admixture effect will show a genetic variant to be more common in a high-incidence group than in a background population (Sweeney et al. 2007), an effect known as population stratification. Sampling bias issues may be important in studying these groups.

The 2000 Census showed that there were 35.3 million Hispanics living in the United States. This represents approximately 12.5% of the total population of the country. Blacks or African Americans accounted for 12.3%, followed by 3.5% of Asians, 0.9% American Indian and Alaskan Native, and Native Hawaiian and Other Pacific Islanders with 0.1% (Guzmán 2001).

A more recent estimation by the Census Bureau (2006) showed the percentage of Hispanic to be 14.8. This estimation represents an increase of 1.9% in six years, demonstrating a fast growing trend. Moreover, the projected population by race and Hispanic origin for the year 2010 is 48.5 million and 102.6 million by the year 2050. Healthcare professionals need to take into account these trends when applying genetic and genomic health care to this population.

Of the total Hispanic population recorded in the 2000 U.S. Census, more than half (58.5%) are of Mexican origin (Guzmán 2001). Puerto Ricans accounted for nearly 9.6%, Cubans 3.5%, Central Americans, South Americans, and Other Hispanics (including Dominicans) 4.8%, 3.8%, and 2.5% respectively.

Awareness of common health beliefs and practices within the Hispanic population may help the healthcare provider understand health behaviors observed during a genetic counseling session. Attitudes of Hispanic sub-cultures toward diseases and disabilities, reproduction, pregnancy, and childbearing vary considerably.

Familiarity with certain basic cultural values that may affect their perspective toward genetics and ethics is important in determining what is applicable to the individual Hispanic patient and their family. In this chapter three of these are highlighted: allocentrism, simpatía, and familialism.

Allocentrism is a tendency among Hispanics to bond together, in some circumstances even by sacrificing personal needs. In other words, personal independence is not as important as the group welfare (Marin and VanOss-Marin 1991). Allocentrism may also be termed collectivism.

Simpatía values harmonic social interactions. It is the need for behaviors that encourage smooth and pleasant social interactions (Marin and VanOss-Marin 1991; Zea et al. 1994). This cultural value may be at work when a Hispanic person appears to
agree with recommendations from the genetic healthcare team. In addition, they may not question genetic service providers’ advice or ask for exploration of possible options in care. Because of this some patients and family members may not maximize the benefits of genetic counseling or fully participate in the treatment process. Healthcare providers who emphasize courtesy, warmth, and respect in their interactions with Hispanic families tend to be more successful in involving the patient and family members in treatment, potentially reducing non-adherence and facilitating follow-up. As healthcare providers establish a climate of respect, support, and understanding, Hispanic patients and families are more likely to talk about their concerns and sources of disagreement (Zea, Quezada, and Belgrave 1994).

Familismo is a third Hispanic cultural value that may affect the perspectives on genetics and ethics. It is described as a strong attachment to, reciprocity with, and loyalty to family members (Triandis et al. 1982). This cultural value has important implications for the perspective of genetics and ethics because extended family members are likely to be consulted and their opinions given considerable weight. Attention to this value can facilitate support and involvement during a genetic consultation and may be essential in order for the patient and family members to participate in informed decisions. Healthcare providers need to create a climate wherein genetic counseling is sensitive to the cultural values of Hispanic families.

Gender roles are delineated traditionally, with the father being the viewed as the provider, the mother as primarily responsible for the household chores and childbearing, and the children expected to be respectful to the elderly (Knoerl 2007). The efficacy of home remedies and folk medicine is a widely respected health belief among Hispanics (Giger and Davidhizer 2004). In the Hispanic population, health decisions are influenced by a diverse variety of beliefs about health and illness. Additionally, social class, the level of education, and acculturation in an individual family or kindred influence health decisions. Acculturation is the process by which changes in behaviors, norms, values, and attitudes occur when one cultural group comes into contact with another (Valentin 2001). This process takes place by observation of the new host culture, reacting to the new culture, and in the end, adjusting to the host culture in order to better function in it. For example, the movement of some Hispanic populations to the United States has resulted in the blurring of cultural values and health practices carried from countries of origin. The effects of acculturation can vary depending on several factors, and healthcare beliefs and practices may evolve as families and groups adjust to new surroundings.

The identification of genetic risks factors for disease is difficult in the Hispanic population as a result of a two-way admixture of indigenous American and European populations or a three-way admixture of indigenous American, European, and West African populations (Bertoni 2003; Tan et al. 2007). Despite this difficulty, the sub-groups within the Hispanic population are often treated as a homogenous population.