The Value of Genetic Information to Adult Adopted Individuals
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.
|Official Title:||Genetic Information: Exploring the Value to Adult Adoptees|
|Study Start Date:||April 2003|
|Estimated Study Completion Date:||January 2004|
Please refer to this study by its ClinicalTrials.gov identifier: NCT00057694
|United States, Maryland|
|National Human Genome Research Institute (NHGRI)|
|Bethesda, Maryland, United States, 20892|