Cultural diversity continues to increase in many countries around the world. In the United States this diversity has increased significantly over the past decade. It is essential that healthcare professionals provide genomic-focused care in a culturally sensitive manner, recognizing and respecting the cultural values and beliefs of each and every patient. The purpose of this article is to increase healthcare providers' awareness of basic cultural values that can influence the decisions made by members of diverse patient populations. This article will describe the concepts of culture, race, ethnicity, ethno-culture, and genetic diseases in specific populations. In addition, it will discuss ethno-cultural values of Hispanics, African Americans/Blacks, Native American Indians or Alaskan Natives, and Native Hawaiians or other Pacific Islanders that may influence patient and family responses to genomic healthcare, noting the need to incorporate an ethno-cultural lens in assessing patients and providing genomic interventions for them. The article will conclude with recommendations for providing care to diverse populations.
Key words: culture, ethnicity, ethno-cultural, genetic diseases, genomic healthcare, race
Providing culturally competent care is important because different patients, families, and groups will react differently to various genomic services depending on their cultural values and beliefs.Recent and projected growth in ethnic and racial groups has been noted in many countries around the world. In the United States (US) the U.S. Census Bureau (2007) has reported a recent, rapid increase in ethnic and racial diversity. This increase has necessitated that healthcare providers consider differing cultural values as they approach patients and their families with genomic information and provide clinical genomic services to them. These clinical services may include, but are not limited to, providing clinical evaluations, establishing diagnoses, estimating risks, and offering informative and supportive counseling and follow-up care. Providing culturally competent care is important because different patients, families, and groups will react differently to various genomic services depending on their cultural values and beliefs.
Understanding cultural diversity, particularly the variations among races and ethnicities, is of major importance when providing culturally competent, genomic healthcare that meets the needs of an increasingly diverse population (Paniagua & Taylor, in press). A culturally competent healthcare provider is defined as one who offers "the level of knowledge-based skills required to provide effective clinical care to patients from a particular ethnic or racial group" (U.S. Department of Health and Human Services [U.S. DHHS], 1994, para. 1). In order to convey genomic information effectively to patients and families, healthcare providers need to understand the cultural values of each of their patients and anticipate how these values will influence the way in which patients, families, and communities will interpret and act on this information.
In 2003, Kirk, McDonald, Anstey, and Longley reported on a project commissioned by the United Kingdom (UK) National Health Service to define core competencies in genetics for all nurses, midwives, and health visitors across the UK. This U.K. project, which narrowed down the expected competencies to those most essential and applicable to the entire profession, inspired a similar effort in the US (Jenkins & Calzone, 2007). The result of this U.S. initiative was the development of the Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics document (Consensus Panel, 2006).
The primary purpose of this U.S. document was to define essential genomics and genetics competencies for all registered nurses in the United States. These essential competencies include the professional responsibility of all nurses to demonstrate their ability to tailor genetic and genomic information and services to clients based on their culture, religion, knowledge level, literacy, and preferred language. Although designed for nurses in the US, this document can be useful for nurses worldwide (Jenkins & Calzone, 2007).
This article will describe the concepts of culture, race, ethnicity, ethno-culture, and genetic diseases in specific populations. In addition, it will discuss ethno-cultural values of Hispanics, African Americans/Blacks, Native American Indians or Alaskan Natives, and Native Hawaiians or other Pacific Islanders that may influence patient and family responses to genomic healthcare, noting the need to incorporate an ethno-cultural lens in assessing patients and providing genomic interventions for them. The article will conclude with recommendations for providing care to diverse populations.
Genetics generally focuses on a single gene whereas genomics involves multiple genes, as well as other factors, such as the environment, that may contribute to the “expression” or triggering of individual or groups of genes. The cultural backgrounds of differing populations have a significant influence on their collective perspective on genomics. In the experience of these authors, the perspectives of various populations toward genomics have been given very little attention to date by healthcare providers.
This section will discuss briefly the concepts of culture, race, ethnicity, ethno-culture, and racial and ethnic genetic diseases to set the stage for the more in-depth discussion of cultural values and beliefs that are important to consider when providing clinical genomic services. Defining culture, race, and ethnicity is difficult because there is not one clearly established definition for these terms. In some instances, these terms have been used interchangeably by the media, researchers, and some organizations (Gonzalez et al. 2003). Furthermore, race and ethnicity have been the focus of several debates in trying to decide if these constructs have a social or biological root (Kaufman & Cooper, 2001).
There are many ways in which culture can be defined. The U.S. DHHS (1994) has defined culture as a social concept that evolves over time. In a broad sense this definition includes, but is not limited to, such individual variables as race, ethnicity, gender, age, language, socioeconomic status, sexual orientation, disability, literacy level, spiritual and religious practices, and individual values and experiences. A culture can generally be referred to as a non-physical collection of a multitude of values, beliefs, perceptions, customs, practices, family structures, and institutions that influence how individuals and families respond. Shared cultural values result in a sense of belonging for individuals. From a genomic perspective, culture can be seen either as a social concept or as a biological concept, both of which change over time (Race, Ethnicity, and Genetics, 2005). Bassetti (2002) noted that family perspectives related to genetic information also vary as cultural perspectives vary.
Group differences arise from genetic, environmental, and cultural influences. The understanding of race has been conceptualized, in lay terms, as defined in part by genetics and in part by culture, making race a multi-faceted concept (Dubriwnya, Batesb, & Bevan, 2004). The American Association of Physical Anthropologists (1996) states that race refers to a concept that categorizes people in groups, or populations, according to various characteristics and beliefs with common ancestry. Race encompasses genetic differences between populations, differences that include the frequencies of all inherited traits, and also the environment. From a genomic perspective, race has been defined with a geographical connotation (Gonzalez, et al., 2003).
Ethnicity is a concept that broadly refers to a group of individuals who share cultural, socio-economic, religious, political, and other beliefs. From the perspective of genomics, the ethnic background is a construct that takes into consideration common physical characteristics, history and religion, cultural traditions, and sometimes shared genetic inheritance (Gonzalez, et al., 2003; Mao et al. 2007).
The term ethno-cultural is defined broadly and inclusively to include culture and/or ethnicity. Ethno-cultural constructs affect almost all aspects of delivering genetic and genomic information (Weil, 2001). An individual can have multiple ethno-cultural identities, such as Asian-Hispanic-Black, as a result of genetic mixture. Because the ethno-cultural background will differ in patients with multiple ethno-cultural identities, depending on the patient's specific identities, it is important that the healthcare provider individualize the services provided to each patient.
Genetic Diseases Prevalent in Diverse Populations
Researchers have evidence that the genetic component of certain diseases is disproportionately high in some ethnic groups. These diseases, and associated ethnic groups, include sickle cell anemia in African Americans and Hispanic Americans, glucose-6-phosphate deficiency disease in African-Americans, cystic fibrosis and phenylketonuria in U.S. Whites, and Tay-Sachs disease in U.S. Ashkenazi Jews (Nussbaum, McInnes, & Willard, 2007). These genetic differences in disease rates among racial and ethnic groups have been found mainly in Mendelian or single gene disorders, which are disorders caused by a mutation in a single gene (Kaufman & Cooper, 2001). It is important for healthcare providers to be aware of these relationships because these diseases confer disproportional disease risk in specific population groups.
The Need for Using an Ethno-Cultural Lens: Differences in Values
Healthcare providers need to use their cultural lens, i.e., their understanding of cultural differences among patients, in order to provide culturally sensitive, genomic care... The U.S. Census Bureau recently indicated that Hispanics are the largest minority group in the US followed by Black or African American, Asian, American Indian or Alaskan Native, and Native Hawaiians or Other Pacific Islander (U.S. Census Bureau, 2007). Healthcare providers need to use their cultural lens, i.e., their understanding of cultural differences among patients, in order to provide culturally sensitive, genomic care to patients representing these varying cultural backgrounds.
According to the U.S. DHHS, cultural sensitivity is defined as "the ability to adjust one’s perceptions, behaviors, and practice styles to effectively meet the needs of different ethnic or racial groups" (n.d., para. 6). The understanding and acquisition of baseline knowledge of the perspectives of different populations regarding genomics is pivotal to both understanding the potential genetic variations among diverse racial and ethnic groups and providing culturally sensitive care.
Failure to consider ethno-cultural health practices and beliefs, including those related to causes of disease and birth defects, may decrease the effectiveness of genomic care, as ethno-cultural beliefs directly influence how the genomic information related to counseling is received by the client (Weil, 2001). Additionally, the absence of patients' basic knowledge concerning body structure and function, the relative importance attributed to physical as compared to cognitive limitations or disability, the use of lay and/or community health practices and healers, and expectations concerning medical treatment and practitioners, also influence the effectiveness of genomic services. Understanding the association between racial/ethnic ancestry, culture, healthcare values, and behaviors is of major importance when conveying genomic information. The associations between the factors that may influence genomics services are depicted in the Figure.
|Figure. Factors That May Influence Genomic Perspectives|
Research with an emphasis on the cultural aspects of genomics care, such as identifying cultural facilitators or barriers associated with genomic services, is regrettably scarce. Research with an emphasis on the cultural aspects of genomics care, such as identifying cultural facilitators or barriers associated with genomic services, is regrettably scarce. Catz et al. (2005) did recently conduct a focus-group study with patients and healthcare workers in the New York area. The group sessions were conducted in English, Spanish, and Chinese to better understand the attitudes and beliefs toward genetics and genetic testing in these minority populations. They found that although participants had limited understanding about genetics and genetic testing, they expressed an interest in learning more about these topics. Catz et al. found that attitudes about genetic testing reflected two perspectives. One perspective saw genetic testing as beneficial because it might aid in disease prevention and management. The other perspective saw genetic testing as both good and bad. It was seen as good because it might be used positively for prevention. However, it was also seen as bad because this testing could be used unethically and/or cause heightened anxiety if the tests diagnosed a disease condition. The attitudes expressed during these focus groups demonstrated a need for greater genetics education among minority populations to increase their awareness of genetics and potentially improve access to medical services that include genetic services.
Next this article will present key ethno-cultural values of major ethno/racial groups. These groups will include Hispanics, Blacks or African Americans, Native American Indians or Alaskan Natives, and Native Hawaiians or Other Pacific Islanders.
The term Hispanic, defined by the U.S. Census Bureau as those individuals who are of Mexican, Puerto Rican, Cuban, Central/South American, or other Spanish culture or origin, regardless of race, is used by the U.S. government for classification purposes, although some individuals prefer the term Latino. Differences among Hispanic sub-cultures towards diseases and disabilities, reproduction, pregnancy, and childbearing vary considerably. However, one behavior commonly reported among all Hispanics is the tendency to use emergency healthcare services instead of having a regular healthcare provider (Weinick & Jacobs, 2000). Diseases that have a genetic component and are prevalent among Hispanic populations are diabetes mellitus type 2; heart disease; hypertension; obesity; tuberculosis; and cervical, pancreatic, and stomach cancers (Flack et al., 1995; Human Genome Project and Diabetes, 1998; Idrogo & Mazze, 2004; U.S. DHHS, 2007b).
Due to the variety of sub-cultures within the Hispanic population, their perspectives on genomics differ greatly. In spite of these differences, common cultural values permeate. These values include allocentrism , simpatía, respeto, and familialism . Marin and VanOss-Marin (1991) have described the tendency among Hispanics to bond together, even to the point of sacrificing personal needs, as allocentrism . According to these authors, Hispanics prefer to develop relationships within groups that are nurturing, loving, supportive, and respectful. Unfortunately, this cultural value can also move Hispanics to give healthcare providers biased responses or socially desirable answers in order to promote the nurturing character of the encounter. If a client prefers to make decisions on the basis of allocentrism, a community-approach, rather than an approach emphasizing an individual over, or in conflict with the community, can be more effective in counseling situations.
Healthcare providers need to take into consideration the values of the family as well as the clinical aspects of the genomic condition, when sharing genomic information with Hispanic patients. Simpatia relates to the need for behaviors that encourage smooth and pleasant social interactions (Marin & VanOss-Marin, 1991). This cultural value may be seen when Hispanic patients appear to agree with recommendations given by the healthcare team, even when they really disagree with the advice provided.
By virtue of their healing abilities, education, and training, healthcare providers are afforded a high level of respeto and are perceived as authority figures. Respeto implies a mutual and reciprocal deference to an older person or a person that has more knowledge or is more powerful. For example, Hispanic parents having a child who has been diagnosed with a genetic or genomic disease can be stigmatized by their families. To avoid this stigmatization they often keep their child’s condition a secret because sharing this condition publically may be misinterpreted as lacking respeto or not being polite to the parents. Because Hispanics may seldom question genetic or genomic service providers’ advice, they may not maximize the benefits of such counseling or participate fully in the treatment process. Familismo is another cultural value that may influence one's perspective on genomic care. This value has been described as a strong attachment to, reciprocity with, and loyalty to family members (Padilla & Villalobos, 2007; Triandis, Marin, Betancurt, Lisansky, & Chang, 1982). This value can be seen as extended family members' opinions highly influence the patient decision-making process. Healthcare providers need to take into consideration the values of the family as well as the clinical aspects of the genomic condition, when sharing genomic information with Hispanic patients.
Because African Americans are the most genetically diverse population group (Salas, Carracedo, Richards, & Macaulay, 2005), it is difficult to establish a clear listing of common, genetic conditions in this population. However, it has been noted that diseases with a significant genetic component, such as diabetes mellitus type 2, sickle cell anemia, glucose-6-phosphate dehydrogenase deficiency, glaucoma, asthma, hereditary cancer (prostate, breast, and lung), and hypertension, have a high incidence in African Americans (Flemming, Whitlock, Beil, Smit, & Harris, 2005).
According to Fisher (1996), African Americans beliefs about health are based on individual and collective experiences, as well as on socio-cultural norms and education. For example, Fisher explained that when African Americans/Blacks perceive that genomic clinical services may take a long time, they may conclude it is not worth waiting for the treatment. In addition, because some genetic or genomic conditions do not interfere with their daily activities, they may not consider the condition as serious enough to warrant medical intervention.
One of the healthcare beliefs that may influence the African American/Black perspectives on genomics care is a pessimistic view about human relationships. Purnell and Paulanka (2005) noted that often African Americans/Blacks are pessimistic, believing it is more natural to do evil than to do well. Furthermore, their belief systems emphasize: (a) the world is a very hostile and dangerous place in which to live; (b) the individual is open to attack from external forces; and (c) the individual is considered to be a helpless person when he or she has no internal resources to combat such an attack, therefore needing outside assistance. It is important to take these views into consideration as genomic information is delivered. These views may also explain one reason why African American women’s' utilization of genetic screening practices is lower than that of other populations (Singer, Antonucci, & Van Hoewyk, 2004). However, other reasons that can also explain the underutilization of screening practices among African American women include: knowledge-based, access-driven disparities; poor communication of family history; inaccurate risk perception; and lack of awareness of genetic and genomic services (Hall & Olopade, 2006).
Matthews et al. (2000) conducted a study to identify factors that influence participation in genetic testing among African American women with cancer. They conducted three focus groups with men and women representing a broad range of ages and socio-economic levels. Themes addressing African Americans’ lower participation in genetic testing included: (a) lack of awareness of genetic conditions, (b) perceptions about cancer survival, (c) emotional reactions to the process of genetic screening, (d) disillusionment with the medical and research communities, and (e) nature of testing procedures and printed materials. The researchers concluded that understanding this combination of healthcare beliefs can guide strategies for communicating genetic and genomic information related to cancer.
Kinney, Emery, Dudley, and Croyle, (2002) conducted a cross-sectional cohort study with fifty-two African American woman with a high-risk for breast cancer. The purpose was to examine the relationship between beliefs about God as a controlling force in health and adherence to breast cancer screening. Results of this study, which did indicate a high interest in genetic testing, showed that African American women at increased risk for breast cancer and with high 'God locus of health control' scores may have a decreased inclination to participate in clinical breast examinations. Hence, assessing religious and spiritual belief systems when educating and counseling this population may improve understanding and acceptance of information presented.
Laskey et al. (2003) conducted a study among African American premedical students to examine their attitudes toward genetic testing and screening. They concluded that these students had a positive view of genetic testing for prevention of disease and for pre-symptomatic testing. However, the researchers reported concern among these students regarding how the information would be used by patients and others. They reported that the students' concerns were increased by exposure to genetics education. The authors further stated that the students’ negative views on genetic screening, compared with the non-African American minority students, may be related to the broader issues of distrust by African Americans toward the healthcare community.
Singer et al. (2004) examined attitudes about genetic technology and potential barriers to genetic testing held by three ethnic-racial groups: African Americans, non-Hispanic Whites, and Latinos. In this study, 1,232 adults (eighteen years and older) participated in household telephone interviews. The researchers found that African American and Latino respondents were more open to both prenatal and adult genetic testing than were White respondents. However, the researchers also identified barriers to testing, such as lower average income and less insurance coverage, that may affect African American and Latino respondents' perception of genetic testing compared to responses from Whites. They suggested that African Americans beliefs, including religious beliefs, may conflict with their observed preference for genetic testing and discourage them from pursuing genetic testing. Matthews et al. (2000), Taylor (2003), and Purnell and Paulanka (2005) have noted the reluctant attitudes of African Americans to seek medical attention related to a negative collective history of, and considerable disillusionment with, the medical and research communities. They explained that this reluctant attitude may influence African Americans' perspectives on genomics that in turn may result in decreased genomic consultations.
Native American Indians or Alaskan Natives
Native Americans (American Indians) and Alaska Natives (AI/ANs) are almost three times as likely to have diabetes as non-Hispanic European Americans of similar age (U.S. DHHS, 2007a). The Choctaw and Pima Indians, who have a close genetic linkage, have the highest prevalence of diabetes mellitus type 2 within this population (Centers for Disease Control and Prevention [CDC], 2005). In addition, AI/AN suffer disproportionately higher rates of cancers of the colon and rectum compared to European Americans. Conversely, AI/AN have a lower incidence of venous thromboembolism, which may be due to undetermined genetic factors (Stein, Kayali, Olson, & Milford, 2004).
A concern that may influence genomic care in the Native American communities is the perceived stereotyping and stigmatization related to genetic testing. There are more than 500 federally recognized tribes in the US, in addition to other smaller tribes are not recognized federally (U.S. DHHS, 2007a). Each tribe has its own culture, beliefs, and practices (CDC; 2005; U.S. DHHS, 2007a). Therefore, there is a great diversity within this population regarding healthcare seeking and healthcare behaviors.
A concern that may influence genomic care in the Native American communities is the perceived stereotyping and stigmatization related to genetic testing. Native American communities have a general distrust of healthcare (Grims, 2006) similar to African Americans. This perception is rooted in years of research activity within this population without perceived benefits from the research (Burhansstipanov, Bemis, Kaur, & Bemis, 2005). The most egregious research in this regard was the forced sterilization of American Indian woman during the 1970’s (Trombley, 1988).
Dignan, Burhansstipanov, and Bemis (2005) developed an educational intervention to provide ethno-cultural-sensitive, genetic education to Native Americans This four-year, educational intervention, Genetic Education for Native Americans , was designed to provide a unique genetics education program for Native American college and university students. The overall goal was to help improve the decision-making process related to genetics in this population (Native American Cancer Research, 2002). After the intervention, it was noted that, from a cultural perspective, students were more eager to learn about their culture and how genetic research may affect them.
Genomic services to Native American communities should be provided with respect to both the patient and the patient’s tribal community. The delivery of genomic services among this population requires a spiritual perspective, since illness is viewed as a result of disharmony with nature. Sickness may be viewed as a result of disharmony among the sources of life, for example, breaking of sacred tribal taboos. When conducting genetic and genomic research, obtaining the tribal approval is essential and will demonstrate this respect.
Native Hawaiians or Other Pacific Islanders
Native Hawaiians have the highest mortality rates of any U.S. racial or ethnic group for cancers of the breast, lung, ovary, and stomach (CDC, 2007). According to the U.S. CDC, they also have the highest mortality rates for leukemia and non-Hodgkin’s lymphoma, and mortality rates that are higher than for the U.S. population as a whole for heart disease, cancer, and stroke. Furthermore, this population has higher rates of smoking, alcohol consumption, and obesity, all of which have a genetic component.
Considerable variability is found among Pacific Islander populations in regard to ethnicity, culture, religion, work experience, education, and degree of westernization. For example, native Hawaiians view health as holistic and collectivistic (Fong, Braun, & Chang, 2006). Health from a holistic perspective incorporates the body, mind, and spirit. The collectivist view is reflected as nuclear family, extended family, and friends are all involved in decision making and care taking (Lassetter & Baldwin, 2005). Lana and Ka’opua (2003) have explained that this population may also view disease as an imbalance in the physical world; in social relations, for example family discord; and/or in spiritual life. They may believe these imbalances can be cured with native healing practices. Native Hawaiians, like other minority populations, have a general distrust in health and genetic research (Fong et al.), which may influence the perceptions that they have regarding genomics care. As genomic information is presented to this population, providers should consider cultural beliefs about health and healing to avoid having these people perceive genomic information as a negation of their beliefs (Fong et al.). Glanz, Grove, Lerman, Gotay, and Le Marchand (1999) conducted a multiethnic cohort study in Hawaii to explore interest in genetic counseling related to colorectal cancer susceptibility testing. The study included those populations that comprise the largest ethnic groups in the state, namely Japanese, Hawaiian/part-Hawaiian, and Caucasian populations. The study revealed that Hawaiians were somewhat more interested in obtaining genetic counseling, and Japanese were markedly less interested in obtaining genetic testing compared to Caucasians. The study concluded that there was a need to understand more fully how cultural factors affect decision making about genetic testing, genetic counseling, and early detection practices in this population.
Understanding the genetic variability or admixture in minority populations is another key to providing appropriate genetic and genomic services to patients and their families. Ethno-cultural healthcare values and beliefs influence participation in genomic testing, psychological reactions to receiving test results, and willingness to use genomic services. Education is needed to increase healthcare providers’ knowledge about the ethno-cultural values and beliefs of various populations and help them incorporate the ethno-cultural worldviews presented above into their interactions with patients and their families.
Understanding the genetic variability or admixture in minority populations is another key to providing appropriate genetic and genomic services to patients and their families. Racial stereotyping can occur if the healthcare provider assumes that all patients from one specific population comply with a treatment better than all patients from another population. Greater understanding of genetic variability with a population can help to prevent racial stereotyping, which the Institute of Medicine (2003) has identified as a primary factor in unequal treatment of minority patients.
Obtaining a comprehensive, multigenerational family history is important when providing genetic and genomic services. Obtaining a comprehensive, multigenerational family history is important when providing genetic and genomic services. This assessment serves as a basis for identifying social and biological relationships (Bender, 1998). However, as healthcare providers obtain this comprehensive family history, they can also learn about some of their patients' healthcare beliefs and provide more culturally sensitive genomic services. The International Society of Nurses in Genetics (ISONG) has provided a valuable suggestion in reminding providers that it is more important “to explore a single client-centered need or concern than to complete an agenda of standard activities that may have little meaning to the client" (ISONG, 2003, para. 4). It is also recommended that healthcare providers develop skills in incorporating their genomic knowledge into the disease preventive education they provide. For example, the Hispanic population has a genetic predisposition to develop diabetes mellitus type 2. The onset of this condition can be triggered by environmental factors, such as a diet that consists mainly of carbohydrates. When educating this Hispanic population, it is important to consider both ethno-cultural values and genetic predispositions. Teaching a diet that is more appropriate for their genetic make-up may prevent the development of diabetes.
Providing genomic information should be an integral component of everyday nursing care, and all healthcare. Knowledge of the basic ethno-cultural values of patients and their families can guide the healthcare provider in delivering ethno-culturally competent, genomic healthcare that meets the needs of a rapidly growing, diverse population. A growing understanding of the importance of unique, ethno-cultural values will equip the healthcare provider to deliver culturally sensitive, genomic care to individuals from any culture, race, or ethnicity.
This article has described the concepts of culture, race, ethnicity, ethno-culture, and genetic diseases prevalent in diverse populations. In addition, it has discussed ethno-cultural values of Hispanics, African Americans/Blacks, Native American Indians or Alaskan Natives, and Native Hawaiians or other Pacific Islanders that may influence patient and family responses to genomic healthcare, noting the need to incorporate an ethno-cultural lens in assessing patients and providing genomic interventions for them. The article concluded with recommendations for healthcare providers to use in giving care to diverse populations.
Carmen T. Paniagua, EdD, RN, CPC, APRN, BC, ACNP
Dr. Paniagua works at the University of Arkansas for Medical Science, College of Nursing. She is the Adult Acute Care Nurse Practitioner Program Coordinator, where she also serves as the Chair of the Department of Nursing Practice. Additionally, she is a Clinical Assistant Professor at the University of Arkansas for Medical Services (UAMS). She also works part-time with the Adult Cancer Genetic Clinic at UAMS. Dr. Paniagua is actively involved in genetic research. One of her main areas of interest has been integrating genomics, cultural diversity, and healthcare disparities into the nursing curriculum. She has developed online cultural diversity modules, collaborated with multiple healthcare providers, served as a consultant for various hospitals, and presented at the local, state, national, and international level. She has also served as a Commissioner for the Arkansas Health Minority Commission and as a member of the Arkansas Governor Hispanic Advisory Committee. Dr. Paniagua received her BSN and MSN from the University of Puerto Rico, her Post Master’s Degree in Acute Care Nurse Practitioner from the UAMS, and her EdD degree from the University of Arkansas at Little Rock. In addition she completed Post-Doctoral Fellowship/Training in the area of molecular genetics at the National Institutes of Health and Georgetown University.
Robert E. Taylor, M.D., PhD, FACP, FCCP
Dr. Robert E. Taylor serves as the Interim Dean of the College of Medicine at Howard University in Washington, DC, and as Professor of Pharmacology, Medicine, and Psychiatry; Chairman, Department of Pharmacology; and Director, Division of Clinical Pharmacology, Howard University Hospital. He is Board Certified in Internal Medicine; and a member of the Academy of Medicine of Washington, DC, the Medical Society of the District of Columbia, and the National Medical Association (NMA).
He has an extensive record in research activities, and is the recipient of several National Institute on Alcohol Abuse and Alcoholism/National Institutes of Health (NIAAA/NIH) research grants with specific emphasis on the impact of alcohol abuse and alcoholism on African American populations. He has served as Program Director and Principal Investigator, Howard University Collaborative Alcohol Research Center, a NIAAA-funded research Center, and as Principal Investigator on the Interactive Research Program Grant (IRPG), "Novel Phenotypes for the Genetic Analysis of Alcoholism," a collaborative research effort with Indiana University, Washington University, and the State University of New York Downstate. He also serves a Co-Investigator on the "Collaborative Study on the Genetics of Alcoholism" (COGA) project. Dr. Taylor's collective research efforts have generated important studies on the clinical course and the genetics of alcoholism in African Americans. Dr. Taylor has served as member and/or chairman on numerous NIH and U.S. Food and Drug Administration advisory committees and other special committees, task forces, and Federal research review committees. He has been appointed to the National Advisory Council of the NIAAA/NIH and as Scientific Advisor to the Director, NIAAA/NIH.
Article published January 31, 2008
Catz, D.S., Green, N.S., Tobin, J.N., Lloyd-Puryear, M.A., Kyler, P., Umemoto, A., et al. (2005). Attitudes about genetics in underserved, culturally diverse populations. Community Genetics , 8, 161-172.
Centers for Disease Control and Prevention. (2005). Diabetes projects. Retrieved January 6, 2008 from: www.cdc.gov/diabetes/projects/cda2.htm
Centers for Disease Control and Prevention, Office of Minority Health & Health Disparities (OMHD). (2007). American Indian & Alaska Native (AI/AN) populations . Retrieved October 22, 2007 from: www.cdc.gov/omhd/Populations/AIAN/AIAN.htm
Flemming, C., Whitlock, E.P., Beil, T., Smit, B., & Harris, R.P. (2005). Screening for primary open-angle glaucoma in the primary care setting: An update for the US preventive services task force. Annals of Family Medicine, 3 (2), 167-170.
Glanz, K., Grove, J., Lerman, C., Gotay, C., & Le Marchand, L., (1999). Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiology, Biomarkers, and Prevention, 8, 329-336.
Gonzalez, E., Ziv, E., Coyle, N., Gomez, S., Tang, H., Karter, A., et al. (2003). The importance of race and ethnic background in biomedical research and clinical practice. New England Journal of Medicine 348 (12), 1170-1175.
Grims, C.W. (2006). HHS American Indian/Alaska Native health research advisory council meeting . Retrieved on December, 2, 2007 from: www.ihs.gov/PublicInfo/PublicAffairs/Director/2006_Statements/HHS_Research_Advisory_Council-May_18-web_version.pdf.
Idrogo, M. & Mazze, R. (2004). Diabetes in the Hispanic population. Postgraduate Medicine Online, 116 (6). Retrieved December 2, 2007 from: www.postgradmed.com/issues/2004/12_04/idrogo.htm .
International Society of Nurses in Genetics. (2003). Position statement. Genetic counseling for vulnerable populations: The role of n ursing. Retrieved December 2, 2007 from: www.isong.org/about/ps_vulnerable.cfm.
Kinney, A.Y., Emery, G., Dudley, W.N. & Croyle, R.T. (2002). Screening behaviors among African American women at high risk for breast cancer: Do beliefs about God matter? Oncology Nursing Forum 29 , 835–843.
Kirk, M., McDonald, K., Anstey, S., & Longley, M. (2003). Fit for practice in the genetics era: A competence based education framework for nurses, midwives and health visitors. Retrieved December, 2007, from www.glam.ac.uk/socsschool/research/gpu/FinalReport.pdf
Lana, S. & Ka’opua, L.S. (2003). Training community practitioners in a research intervention: Practice examples at the intersection of cancer, western science, and Native Hawaiian healing. Cancer Control , 10 (5 Suppl), 5-12.
Laskey, S.L., Williams, J., Pierre-Louis, J., O’Riordan, M., Matthews, A. & Robin, N.H., (2003). Attitudes of African American premedical students toward genetic testing and screening. Genetics in Medicine , 5 (1), 49-54.
Lassetter, J.H. & Baldwin, J.H. (2005). Improving the experience of hospitalization for Hawaiian children on the mainland through cultural sensitivity to Hawaiian ways of healing. Journal of Pediatric Nursing, 20 (3), 170-176.
Mao, X., Bigham, A.W., Mei, R., Gutierrez, G., Weiss, K.M., et al. (2007). A genomewide admixture mapping panel for Hispanic/Latino populations. The American Journal of Human Genetics , 80, 1171–1178.
Matthews, A.K., Cummings, S., Thompson, S., Wohl, V., List, M. & Olapade, O. (2000). Genetic testing in African Americas for susceptibility of inherited cancer: Use of focus groups to determine factors contributing to participation. Journal of Psychosocial Oncology, (2), 1-13.
Native American cancer research. Genetic education for native Americans . (2002). Retrieved October 23, 2007 from: http://members.aol.com/natamcan/gena.htm
Paniagua, C.P. & Taylor, R.E. (in press). Hispanic/Latino perspectives on genetic tests and ethics. In R. Monsen (Ed.). Genetics and ethics in nursing: New questions in the age of genomics health. Washington, DC: NLN.
Taylor, R.E. (2003). Pharmacological and cultural considerations in alcohol treatment clinical trials: Issues in clinical research related to race and ethnicity. Alcoholism: Clinical and Experimental Research, 27 (8), 1345-1348.
U.S. Department of Health and Human Services. (n.d.). Programs > diversity > definitions. Retrieved December 2, 2007 from http://bhpr.hrsa.gov/diversity/definitions.htm#Cultural Competence
U.S. Department of Health and Human Services. (1994). Programs > diversity > other definitions of cultural competence. Retrieved December 2, 2007 from: http://bhpr.hrsa.gov/diversity/cultcomp.htm
U.S. Department of Health and Human Services, Office of Minority Health. (2007a). American Indian/Alaska Native Profile Indian health service area map. Retrieved December 2, 2007 from www.omhrc.gov/templates/browse.aspx?lvl=1&lvlID=2
U.S. Department of Health and Human Services, Office of Minority Health. (2007b). Hispanic/Latino profile. Retrieved December 2, 2007 from www.omhrc.gov/templates/browse.aspx?lvl=1&lvlID=2
Weinick, R.M., & Jacobs, E.A. (2000). Hispanic healthcare utilization: The role of ancestry, language, and duration of residence in the United States. Abstract of the Academic Health Services Research Health Policy Meeting. p. 17.