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The Value of Genetic Information to Adult Adopted Individuals Clinical Trials Data presented on Clinical Trials Search isn't meant to be a substitute for qualified health advice, calls or treatment using a genuine doctor. We are not docs. Always consult your dr. on The Value of Genetic Information to Adult Adopted Individuals conditions. Clinical Trials Search.org is a site dedicated to listing clinical research studies in human subjects. The Value of Genetic Information to Adult Adopted Individuals Clinical research trials and The Value of Genetic Information to Adult Adopted Individuals healthcare trials occur in a lot of of places throughout the United States. A clinical trial or clinical study is a research project with human volunteer subjects. Clinical drug trials and pharmaceutical clinical trials generally assess the potency of new drugs. The intent of the studies / undertakings is to figure out certain human medical questions. Clinical trials are a popular means for mDs, government agencies, and private sector corporations to locate remedies for all kinds of circumstances, including The Value of Genetic Information to Adult Adopted Individuals. The Value of Genetic Information to Adult Adopted Individuals Clinical Trials and other clinical trials allow volunteers to obtain health treatment alternatives before they are available to the masses. Many times the participants undergo treatment for free, and sometimes they are paid for their time. Occasionally there is a cost for a The Value of Genetic Information to Adult Adopted Individuals clinical trial. Participants typically obtain the most effective healthcare available for their The Value of Genetic Information to Adult Adopted Individuals condition. Dangers are a reality, nonetheless, and can include extra or frequent mD trips, medical hazards (potentially life-endangering), and/or the treatment being uneffective. Trials are federally regulated with rigid guidelines to protect clinical trials patients.
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Home > "T" Clinical Trials Conditions > The Value of Genetic Information to Adult Adopted Individuals  The Value of Genetic Information to Adult Adopted Individuals
The Value of Genetic Information to Adult Adopted Individuals
For Condition: Adoption,Genetic Counseling
Status: Completed
Sponsor(s): National Human Genome Research Institute (NHGRI) ,
Synopsis: 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.
Details: 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.
Eligibility:
Study Type: Observational, Natural History
Minimum Age/Maximum Age: /
Genders: Both
Protocol Entry Criteria: 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.
Total Enrollment: 40
Location and Contact Information:
National Human Genome Research Institute (NHGRI)
Bethesda, Maryland, 20892
United States
Additional Information:
Study ID Numbers: 030144; 03-HG-0144
Study Start Date: April 3, 2003
Record last reviewed: January 20, 2004
Additional information available at: clinicaltrials.gov
Clinicaltrials.gov Reference link: NCT00057694
Other Genetic Counseling Studies:
1. Mental Health Services for Foster and Adopted Children
2. The Value of Genetic Information to Adult Adopted Individuals
Related Studies:
Other Genetic Counseling Clinical Trials
Other Maryland Clinical Trials
Other Bethesda Clinical Trials
The Value of Genetic Information to Adult Adopted Individuals
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