Testing Spanish-language Genetic Literacy
Condition: Genetic Literacy
Study type: Observational

Summary: 
      Background:

        -  Health literacy means being able to understand basic health care information. This
           information can include drug labels and prescription instructions. It can also include
           doctor s instructions. Better health literacy can help improve a person s health
           outcomes.

        -  Many minorities have low health literacy. Latinos in particular have both low health
           literacy and poor health outcomes. Language barriers such as poor reading skills can
           contribute to problems with health literacy. Researchers want to develop a new health
           literacy measuring tool. This tool will focus on genetic literacy, which involves
           understanding personal risk of health problems. The tool will be written in Spanish. The
           study will work with Spanish-speaking Latinos to develop and test this genetic literacy
           tool.

      Objectives:

      - To develop a Spanish-language tool to study genetic literacy.

      Eligibility:

      - Spanish-speaking Latino adults between 18 and 75 years of age.

      Design:

        -  Participants will be screened with a brief interview. No personal samples will be
           needed.

        -  Participants will complete the genetic literacy questionnaire. It will be given in
           Spanish.

        -  The tool will ask about participants personal and family health history. It will also
           ask about their understanding of genetic terms and genetic testing. Other personal
           information, such as level of education, will be collected.

        -  Participants will receive a gift card for completing the survey.

        -  No treatment or genetic counseling will be provided as part of this study.
    

Detailed description: 
      The proposed study seeks to better understand genetic literacy in the U.S. Latino

      population by developing and validating a Spanish-language measure of genetic literacy and

      subsequently exploring the relationships between genetic literacy, personal characteristics,

      exposure to genetics, acculturation, and self-efficacy to discuss family health history

      information. This study is primarily informed by research in health literacy, which is
      defined as

      an individual s ability to understand and use health information to make informed decisions.

      Past research has modeled the effects of demographic factors, prior experience, and prior

      knowledge on health literacy, and in turn to health behaviors and outcomes. These same

      domains apply when considering the concept and operationalization of genetic literacy: an

      individual s ability to understand and use genetics-related information to make informed

      decisions.

      Numerous studies have reported the wide prevalence of disparities among minorities in various
      areas of healthcare, including use of genetics services, and many of these inequalities have
      been related to low health literacy. Latinos represent one group in particular that has been
      shown to have both low health literacy and some of the poorest health outcomes. A few studies
      have explored the public s knowledge of genetics, and differences in level of understanding
      were found amongst minority groups. Given the increasing importance of genetics in healthcare
      and the rapidly growing population of Latinos in the U.S., it is of particular importance to
      assess this population s genetic literacy. The first aim of this study is to develop a
      Spanish-language genetic literacy measure and validate it against an existing
      Spanish-language health literacy measure. Then this study will examine the relationship of
      genetic literacy in the Latino population to certain demographic characteristics, previous
      exposure to genetics, acculturation, and participants self-efficacy to discuss health history
      information with family members and providers. Study participants will be recruited through
      convenience sampling in three different areas of Maryland with a high percentage of Latinos.
      This study will contribute to the limited body of knowledge about genetic literacy in the
      Latino population, and expand understanding of how genetic literacy influences individuals
      genetics-related self-efficacy.
    

Time perspective: Prospective
Keywords: Genetic Literacy; Latino