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Genetic Counseling clinical trials

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NCT ID: NCT00057694 Completed - Genetic Counseling Clinical Trials

The Value of Genetic Information to Adult Adopted Individuals

Start date: April 2003
Phase: N/A
Study type: Observational

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.

NCT ID: NCT00047905 Completed - Genetic Counseling Clinical Trials

Pilot Study of the Process of Prenatal Genetic Counseling

Start date: October 2002
Phase: N/A
Study type: Interventional

This study will examine the process of prenatal genetic counseling to determine how various client and counselor factors affect the communication process in a counseling session. The specific aims of the study are to: - Provide information on prenatal genetic counselors' interactions with clients for the basis of a future larger study of the genetic counseling process. - Determine the average length and the range of length of prenatal genetic counselors' interactions with clients when family history information has already been provided. - Document on videotape the communication content and interaction dynamics of prenatal genetic counselors interacting with clients in order to: - Characterize different models of prenatal genetic counseling - Determine the nature of discussions concerning cystic fibrosis carrier testing within the context of prenatal genetic counseling. - Examine the impact of prenatal genetic counselors' characteristics (years of experience, training and background, age, clinical setting, anxiety) on the communication content and interaction dynamics of sessions with clients. - Examine the impact of the presence of a spouse on the communication content and interaction dynamics of prenatal genetic counseling sessions with clients. - Examine the impact of client verbal emotional cues on the communication content and interaction dynamics of prenatal genetic counseling sessions. Counselors will be recruited for this study from among practicing prenatal genetic counselors at regional meetings and a national meeting of the National Society of Genetic Counselors. They will perform prenatal genetic counseling sessions with actors in the roles of client and client's spouse. The sessions will be videotaped, and the counselor and actors will fill out questionnaires regarding the characteristics of the counselor and the session. Counselors may be contacted later to request permission to use segments of their videotaped sessions for creating a video teaching tool for counseling professionals that illustrates different ways to practice the genetic counseling.