Socio-Cultural Diversity Projects

African American and Hispanic Populations
Project Lead: Dr. Kathryn Hassell

In all states in the Mountain States Region, infants identified with sickle cell disease by newborn screening are contacted by newborn screening follow-up personnel and referred to a regional sickle cell disease expert. However, the extent of life-long care for sickle cell patients in other areas of the region by providers with relevant knowledge about sickle cell disease, especially into adulthood, is unknown.

The target population in the region extends beyond the African American community.  According to results of a Colorado Sickle Cell Center project ("Identification of Possible Communities at Risk for Sickle Cell Trait"), funded by the Mountain States Genetics Regional Collaborative Center, 29% of infants born in Colorado with sickle cell trait in 2005 were born to mothers who self-identified to be of Hispanic descent on their birth certificate. Unfortunately, only a limited amount of patient educational material is available in Spanish, and most Spanish-speaking providers lack even basic knowledge about sickle cell disease. Other cultural groups, including native Africans, seek care in the region. An increasingly diverse population of families potentially at-risk for infants with sickle cell disease may not be aware of the risk due to community assumptions about the distribution of sickle cell trait. Improving the awareness of providers who provide such services that identify a broader group of patients at-risk is a critical step in sickle cell disease prevention.  Significant cultural and language barriers can impede access to a competent medical home for these groups as well. Serving each of these target populations by identifying and supporting medical homes and communities in areas where sickle cell patients and their families choose to live and work is of critical importance in the region.

Native American Populations
Project Lead: Dr. Murray Brilliant

At the crossroads of medicine, molecular biology, biochemistry, and all other life sciences, genetics is wide-ranging and inherently interdisciplinary. Genetics provides the fundamentals for the understanding of life, and it has profound implications for human health and economics. Although the general public is aware of the importance of Genetics, there are misunderstandings leading to unjustified fears about genetics research, as well as a few publicized breaches of trust, leading to justified concerns regarding Genetics research. This is especially an issue among Native American populations in the mountain states of Arizona, New Mexico, Montana and Utah.

A general lack of respect and sensitivity to the religious and cultural beliefs of the Native American peoples by some researchers and medical personnel has given the Native American population cause to not trust or believe information given to them by the American health system. Genetics raises it own set of questions and fears as it deals with DNA, a very sensitive issue for Native Americans.

The goal of the project is to increase knowledge about genetics and genetic services with the ultimate aim of improving access to genetics information and services in the region. This will be accomplished through the development and implementation of consumer education and dialogue programs created specifically for and offered in locations accessible to the Native American population.