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NCT07077707
During pregnancy, all pregnant people are offered tests to look for genetic conditions in the baby. However, there isn't a standard way of giving this information to patients. Doctors have a lot of things to discuss during the first prenatal visit and don't always have time to explain genetics in detail. Also, not everyone has access to genetic counselors. Prenatal genetics can be confusing, especially for people who haven't had a lot of formal education or who speak languages other than English. There might be misunderstandings about what these tests can find and what their benefits or risks are for these tests. Mobile apps, like chatbots, could be a helpful way to give information about prenatal genetics. Almost everyone has a cell phone, and a chatbot can let people learn at their own speed and whenever they want. The goal of this study is to see if a chatbot app Prenatal GENEie can teach pregnant women about prenatal genetics, and compare the chatbot to talking with a genetic counselor in person. The study wants to answer these main questions: * Does the Prenatal GENEie help pregnant patients learn about prenatal genetics the same way as a meeting with a genetic counselor? * Can the Prenatal GENEie and in-person counseling both help people make decisions about whether they want prenatal genetic testing? The researchers will compare the chatbot Prenatal GENEie with in-person counseling to see if the chatbot teaches people about prenatal genetics in a similar way. Participants will: * Take a test to check what they already know about prenatal genetics prior to the intervention * Use the chatbot or have an in-person meeting with a genetic counselor * Take a test after using the chatbot or meeting with a counselor to see how much their knowledge has improved * Fill out a survey about how comfortable they feel with their decision to do or not do prenatal genetic testing
NCT03024424
The goals of this study are: To assess the impact of genetic testing based on how it alters behaviors, to assess the utility of serum biomarker measurement in combination with genetic testing, to assess the utility of genetic counseling in personal analysis of risk for age-related macular degeneration (AMD), and to assess the impact of presymptomatic genetic testing for choroidal neovascularization (CNV).
NCT03723018
This study is designed to determine whether meditation is beneficial for genetic counselors and genetic counseling students. The main goal is to see if meditation can help with professional well-being (burnout for genetic counselors, stress for genetic counseling students). The investigators will also explore whether meditation has other benefits for the genetic counseling profession.
NCT04428710
The study of hereditary cancer related syndromes allows reducing the risk of suffering in cancer to patients and close relatives. The objective of this study will be to evaluate the prevelance of psychological morbidity in patients attended at cancer genetic counselling unit, and to determine the socio-demographic and clinical factors that influence it. A descriptive cross-sectional study will be carried out. Patients attented at the cancer genetic counselling unit, who have criteria for conducting a genetic syndrome test related to hererditary cancer, will be consecutively evaluated. To knowing the psychological morbidity it is relevant to providing care for these patients.
NCT04575350
We aim to assess the usefulness of systematic reinterpretation of CNV of unknown significance. To investigate this question we will study all CNV of unknown significance detected between 2010 and 2017.
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': * 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.
NCT00047905
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.