- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT00359710
Patients' Perspectives on Identity, Ancestry and Genetics
Identity, Ancestry and Genetics: Patients' Perspectives
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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Study Overview
Status
Conditions
Detailed Description
Study Type
Enrollment (Actual)
Contacts and Locations
Study Locations
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Maryland
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Bethesda, Maryland, United States, 20892
- National Institutes of Health Clinical Center, 9000 Rockville Pike
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Participation Criteria
Eligibility Criteria
Ages Eligible for Study
Accepts Healthy Volunteers
Genders Eligible for Study
Description
- 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.
Study Plan
How is the study designed?
Collaborators and Investigators
Publications and helpful links
General Publications
- Jorde LB, Wooding SP. Genetic variation, classification and 'race'. Nat Genet. 2004 Nov;36(11 Suppl):S28-33. doi: 10.1038/ng1435.
- Collins FS. What we do and don't know about 'race', 'ethnicity', genetics and health at the dawn of the genome era. Nat Genet. 2004 Nov;36(11 Suppl):S13-5. doi: 10.1038/ng1436.
- Bonham VL, Warshauer-Baker E, Collins FS. Race and ethnicity in the genome era: the complexity of the constructs. Am Psychol. 2005 Jan;60(1):9-15. doi: 10.1037/0003-066X.60.1.9.
Study record dates
Study Major Dates
Study Start
Study Completion
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Estimate)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Keywords
Other Study ID Numbers
- 060148
- 06-HG-0148
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
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