Genetic Counseling Clinical Trial
Official title:
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.
Status | Completed |
Enrollment | 40 |
Est. completion date | January 2004 |
Est. primary completion date | |
Accepts healthy volunteers | No |
Gender | Both |
Age group | N/A and older |
Eligibility |
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. |
N/A
Country | Name | City | State |
---|---|---|---|
United States | National Human Genome Research Institute (NHGRI) | Bethesda | Maryland |
Lead Sponsor | Collaborator |
---|---|
National Human Genome Research Institute (NHGRI) |
United States,
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. — View Citation
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. — View Citation
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. — View Citation
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