Patients' Perspectives on Identity, Ancestry and Genetics

This study has been completed.
Sponsor:
Information provided by:
National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:
NCT00359710
First received: August 1, 2006
Last updated: February 24, 2011
Last verified: February 2011
  Purpose

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.

...


Condition
Family History

Study Type: Observational
Official Title: Identity, Ancestry and Genetics: Patients' Perspectives

Further study details as provided by National Institutes of Health Clinical Center (CC):

Enrollment: 22
Study Start Date: April 2006
Estimated Study Completion Date: February 2011
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.

  Eligibility

Ages Eligible for Study:   21 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Criteria
  • EXCLUSION CRITERIA:

Individuals will be excluded from the study if they do not have at least one parent that self-identifies as Black or has African ancestry and another parent that self identifies as White or has European ancestry. Other exclusion criteria include: (1) under 21 years of age, (2) not had at least two clinical visits with a health care professional in the last year and (3) not more than one individual per family.

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00359710

Locations
United States, Maryland
National Institutes of Health Clinical Center, 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
Sponsors and Collaborators
  More Information

Publications:
ClinicalTrials.gov Identifier: NCT00359710     History of Changes
Other Study ID Numbers: 060148, 06-HG-0148
Study First Received: August 1, 2006
Last Updated: February 24, 2011
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Multiracial Populations
Human Genetic Variation
Family History
Admixture
Physician-Patient Communication
Ancestry
Self-Identified Multiracial Adults
Interview

ClinicalTrials.gov processed this record on August 21, 2014