Patients' Perspectives on Identity, Ancestry and Genetics

Completed

• Conditions: Family History

• Registration Number: NCT00359710
• Lead Sponsor: National Human Genome Research Institute (NHGRI)

Brief Summary

This study will collect the opinions, understandings and personal health care experiences of multiracial persons of African and European ancestry. Understanding multiracial patients' beliefs and experiences about their race, ethnicity, ancestral origin and the genetic components of diseases can provide important data for developing ways to communicate how human genetic variation is related to self-identified race and ethnicity. The study will:

* Investigate multiracial individuals' beliefs about biological and genetic differences based on race and ethnicity;

* Collect stories of identity, ancestry and clinical experiences of multiracial individuals with one parent of African ancestry and one parent of European ancestry;

* Investigate multiracial patients' experiences regarding family health history and communication of genetic risk of disease.

Persons 21 years of age or older in the Atlanta, Georgia, or Washington, D.C., metropolitan areas who are from a multiracial background and have used health care services in the last 2 years may be eligible for this study. Participants are interviewed one-on-one for about 2 hours to gather information about their background, family ancestry, self-identity, race and ethnicity, health care interactions and genetics and health. Each participant completes a short questionnaire before and after the interview.

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Detailed Description

The complex relationships between self-identified race, ethnicity, ancestral origin and the genetic components of diseases demands a better understanding of patients' conceptions of these identifiers and how they impact their health. The lived experiences of multiracial individuals can provide valuable perspectives on questions of race and ethnicity, the collection of ancestral information in assessing health history and communication of racial or ethnic specific disease risk. Understanding patients' beliefs and experiences will provide important data for developing ways to communicate how human genetic variation is related to self identified race and ethnicity. We aim to conduct semi-structured in-depth interviews with adults at least 21 years of age who identify as having a multiracial background with African and European ancestry. The study will include participants from the Atlanta, Georgia and Washington, D.C. metropolitan areas. This preliminary study uses qualitative methods to capture the personal stories of identity, ancestry and clinical experiences from a population that has not been adequately researched.

Study Timeline

• Study Start: 2006-04-19
• Study First Submitted: 2006-08-01
• Study First Submitted QC: 2006-08-01
• Study First Posted: 2006-08-02
• Status Verified: 2011-02-23
• Study Completion: 2011-02-23
• Last Update Submitted: 2017-06-30
• Last Update Posted: 2017-07-02

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 22

Inclusion Criteria

Not provided

Exclusion Criteria

Not provided

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Trial Locations

Locations (1)

National Institutes of Health Clinical Center, 9000 Rockville Pike; 🇺🇸 Bethesda, Maryland, United States