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Sponsored by: |
National Human Genome Research Institute (NHGRI) |
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Information provided by: | National Institutes of Health Clinical Center (CC) |
ClinicalTrials.gov Identifier: | NCT00057694 |
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':
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:
Condition |
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Adoption Genetic Counseling |
Study Type: | Observational |
Official Title: | Genetic Information: Exploring the Value to Adult Adoptees |
Estimated Enrollment: | 40 |
Study Start Date: | April 2003 |
Estimated Study Completion Date: | January 2004 |
In contrast to the majority of the population, many adopted individuals do not have access to personal or familial medical information because of laws and practices that prevent disclosure. A body of research has suggested however that adopted individuals are interested in obtaining this information regarding their biological families. The proposed study broadly aims to explore adult adoptees' perceptions regarding the potential value of genetic and family history information. Specifically it will investigate adoptees' motivations for obtaining the information, their perceptions regarding the influence of genetics on health, and their experiences with healthcare providers related to adoption and medical information. These objectives will be addressed in telephone interviews with English-Speaking adult adoptees (over the age of 18 years) that were placed in unrelated adoptive families. A semi-structured guide for the telephone interviews consists of a series of open-ended questions that explore the objectives of the study. We hope to collect data on about 40 individuals. The data will be subject to coding for thematic analyses to identify recurring trends and themes. This study has implications for genetic counselors as the findings may guide the development of appropriate educational messages and counseling recommendations for adopted individuals related to their genetic and family history information.
Genders Eligible for Study: | Both |
Accepts Healthy Volunteers: | No |
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 ID Numbers: | 030144, 03-HG-0144 |
Study First Received: | April 5, 2003 |
Last Updated: | March 3, 2008 |
ClinicalTrials.gov Identifier: | NCT00057694 |
Health Authority: | United States: Federal Government |
Qualitative Telephone Interviews Genetic Counseling Family History |
Health Information Adult Adoptees Adult Adoptee Interview |