A Genetic Counseling Cultural Competence Toolkit


Rationale for Project
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2009 JEMF Project Goal

The long-term goal of this project is to increase cultural competence in the genetic counseling profession through the development of an online Genetic Counseling Cultural Competence Toolkit (GCCCT).

Project Objectives

a) To determine needs and identify strategies to promote cultural and linguistic competence in the genetic counseling profession;

b) To develop a GCCCT to provide training on cultural and linguistic competence for practicing genetic counselors and genetic counseling training programs; and

c) To facilitate widespread dissemination and assess utilization and impact of the GCCCT on genetic counselors, genetic counseling training programs, and prospective students.

Project Need

As a genetic counseling program director for many years, I was aware that the demographics of our profession do not reflect the diversity of the U.S. I also recognized that if the genetic counseling training programs did not consistently recruit and retain underrepresented minority students, the profession could not diversify. In 2004, dissatisfied with our collective lack of progress, I convened a retreat of the Midwest genetic counseling program directors, a minority partner from each institution, and other diversity experts. After evaluating the directors’ previous approaches to recruitment, the experts and partners concurred that our actions, however well-intentioned, were naïve and predictably ineffective. Our genetic counseling “culture” could be perceived as intimidating or frightening. We were encouraged to accept, not deny, the public’s fears about genetics and clearly articulate what genetic counseling is, and how it applies to the public and prospective students. The experts also encouraged infusing cultural competence within ourselves, the genetic counseling training programs, clinical practices, our home institutions, and the entire profession to successfully attract underrepresented minority students and provide optimal services. I did more research and found that the expert’s advice was reinforced by diversity experts in our field, but I was generally unaware of that. I decided to write a proposal for a JEMF Fellowship, which supports an individual counselor’s pursuit of an area of interest. I wanted to focus on learning more about cultural competence and pedagogy, My better understanding of these topics would then be used to promote further interest in and applications of cultural and linguistic competence in the genetic counseling profession, and thereby contribute to reducing health disparities.

Significance for the Genetic Counseling Profession

The 2006 U.S. Census Bureau reports the population is 66% White, 15% Hispanic or Latino, 13% African American, 4% Asian, 1% American Indian or Alaska Native, 0.5% Native Hawaiian or Pacific Islander, and 6% other. By the year 2050, the proportion of racial and ethnic minorities in the U.S. will exceed 50%. Among genetic counselors who completed the recent Professional Status Survey, 91% were Caucasian, 4.9% Asian, 2% Hispanic, 1% African American and 1% other. Health conditions with a genetic component are ubiquitous and often overrepresented in minority populations due to health disparities. These population trends, along with the elucidation of the genetic basis of common diseases, increase demands on genetic counselors to deliver quality care to diverse clients. However, commonly used proxies such as skin color or last name are neither accurate measures of diversity nor are they accurate predictors of a client’s genetic risks, behaviors, or values. A genetic counselor’s skill set is influenced by culture and should be adjusted for each client. As genetic counselors gain proficiency in providing transcultural care, we can expect greater acceptance of genetic services in hard to reach communities, and a greater public health impact.

Cultural competence toolkits have been developed by other health professions, yet genetic counseling lacks widely available resources. Developing a toolkit and increasing cultural competence in genetic counseling is expected to enhance patient-centered care and improve client satisfaction. This project proactively involves the genetic counseling profession in the national dialogue on reducing health disparities.

Significance for Recruitment

Cultural awareness is the backbone of minority recruitment. Universal cultural awareness is particularly important when there are few underrepresented minority role models. Cultural factors can affect choice of career and recruitment of underrepresented minority students to higher education, suggesting programs should explicitly address these factors in the overall institutional climate. If applicants feel their culture is valued and accepted, raising cultural awareness and cultural competence in programs may increase racial/ethnic representation among potential applicants. The GCCCT points out the developmental nature of cultural competence and encourages students to continue self-exploration. Because the GCCCT is posted on the NSGC website, it can also reach prospective students. We hope that this project heightens general awareness of cultural competence in the profession, and leads to increased recruitment of underrepresented minority students.

Significance for Genetic Counseling Training Programs

In addition to influencing recruitment, the GCCCT can be used to train linguistically competent and sensitive genetic counseling graduate students. Genetic counseling training programs may use the GCCCT to help students identify literacy-appropriate patient educational materials, work more effectively with professional interpreters, and to participate in cultural immersion rotations. We include a variety of cultural assessment tools to analyze case studies and links to questions that may be adapted for use in clinical intake forms and counseling sessions. The GCCCT provides strategies for exploring factors affecting clients’ perspectives, resulting in students’ desire to work with diverse clients.

Significance for NSGC and Organizational Impact

The presence of health disparities has not been fully explored in genetic counseling. However, the evidence in health care indicates that even well-intentioned providers may contribute to health disparities because they experience biases, prejudices, and uncertainty when treating minorities. Providing training for health care providers is a strategy to correct the disparities. In addition, more minority providers are needed, especially since they are more likely to serve minority and underserved communities. When advocating for workforce diversity and efforts to promote cultural competence, NSGC leaders have noted that cultural competence is a missing link between minority recruitment and the provision of optimal services to culturally diverse populations. This project is significant because the GCCCT complements NSGC organizational cultural competence efforts and epitomizes the professional core value “to respect clients’ beliefs, inclinations, circumstances, feelings, family relationships, and cultural traditions.”

Significance for the Delivery of Health Care

Healthy People 2010 called for eliminating health disparities among racial and ethnic populations in the U.S. However, racial and ethnic disparities in health care access, quality and outcomes abound. While poverty is associated with poor health status, health disparities persist even when adjusted by income and level of education. Minority patients face difficulties in accessing quality care and communicating with providers. Minority clients are more likely to feel disrespected or misunderstood, and less likely to comply and/or be actively involved in their treatment. Disparities may be linked to lack of provider training in cultural competency, stereotyping or biases, as well as inflexibility of organizations to support diverse populations. Promoting cultural competence among genetic counselors aligns with national public health initiatives to improve the health of minority individuals by enhancing the quality of our practices, attracting minority patients to use genetic services, and increasing patient satisfaction.

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