- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT00057694
The Value of Genetic Information to Adult Adopted Individuals
Genetic Information: Exploring the Value to Adult Adoptees
This study will explore adult adoptees' perceptions of the potential value of genetic and family history information. Unlike most people, many adopted individuals do not have access to personal or family medical information because of laws and practices that prevent disclosure. Research suggests that adopted individuals are interested in obtaining this information about their biological families. This study will examine adoptees':
- Satisfaction with the amount of genetic information they have, their motivations for wanting more information, and when it becomes important for them to have this information.
- Perceptions of the degree to which they believe genetics and family history influence various traits and conditions.
The study will also explore adoptees' interactions with health care providers so that recommendations can be developed for helping genetic counselors meet the needs of these individuals.
English-speaking adoptees 18 years of age and older are eligible for this study. Those enrolled will participate in a one-time telephone interview that will take about 45 to 60 minutes. The interview will obtain demographic information, such as the adoptee's age, sex, racial and ethnic background, marital status, and education level, and will include questions in the following areas:
- Personal adoption story;
- Perceptions of the role of the biological family history and medical information and its importance and usefulness;
- Perceptions of the influence of genetics and family history on health;
- Reproductive history and pregnancy concerns related to being adopted;
- Experiences and interactions with health care providers related to adoption;
- Suggestions for improving interactions with health care providers.
Study Overview
Status
Conditions
Detailed Description
Study Type
Enrollment
Contacts and Locations
Study Locations
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Maryland
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Bethesda, Maryland, United States, 20892
- National Human Genome Research Institute (NHGRI)
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Participation Criteria
Eligibility Criteria
Ages Eligible for Study
- Child
- Adult
- Older Adult
Accepts Healthy Volunteers
Genders Eligible for Study
Description
INCLUSION CRITERIA:
English-speaking adoptees, over 18 years of age, who were placed in unrelated adoptive families.
EXCLUSION CRITERIA:
Adult adoptee that participated in piloting.
Study Plan
How is the study designed?
Collaborators and Investigators
Publications and helpful links
General Publications
- American Society of Human Genetics Social Issues Committee report on genetics and adoption: points to consider. Am J Hum Genet. 1991 May;48(5):1009-10. No abstract available.
- Aumend SA, Barrett MC. Self-concept and attitudes toward adoption: a comparison of searching and nonsearching adult adoptees. Child Welfare. 1984 May-Jun;63(3):251-9.
- Bansal A, Critchfield GC, Frank TS, Reid JE, Thomas A, Deffenbaugh AM, Neuhausen SL. The predictive value of BRCA1 and BRCA2 mutation testing. Genet Test. 2000;4(1):45-8. doi: 10.1089/109065700316462.
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 (Estimate)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Keywords
Other Study ID Numbers
- 030144
- 03-HG-0144
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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