BRCA COUNSELING/TESTING FOR URBAN AFRICAN AMERICAN WOMEN

为城市非裔美国女性提供 BRCA 咨询/测试

基本信息

批准号：
7605349
负责人：
HEIDDIS VALDIMARSDOTTIR
金额：
$ 0.55万
依托单位：
ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
依托单位国家：
美国
项目类别：
财政年份：
2007
资助国家：
美国
起止时间：
2007-03-01 至 2008-02-29
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7605349
关键词：
Address African American Attitude BRCA1 Mutation Benefits and Risks Breast Cancer Genetics CD-I CD-ROM Complex Computer Retrieval of Information on Scientific Projects Database Condition Conflict (Psychology)Counseling DNA Sequence Decision Aid Decision Making Development Discrimination Disease Family Cancer History Funding Genetic Counseling Genetic screening method Goals Grant Hereditary Breast and Ovarian Cancer Syndrome Inherited Institution Insurance Knowledge Medical Genetics Numbers Outcome Probability Randomized Clinical Trials Research Research Design Research Personnel Resources Risk Source Staging Standards of Weights and Measures Stigmatization Testing United States National Institutes of Health Utility Theories Variant Woman base efficacy evaluation mutation carrier prevent psychological distress satisfaction

Address African American Attitude BRCA1 Mutation Benefits and Risks Breast Cancer Genetics CD-I CD-ROM Complex Computer Retrieval of Information on Scientific Projects Database Condition Conflict (Psychology)Counseling DNA Sequence Decision Aid Decision Making Development Discrimination Disease Family Cancer History Funding Genetic Counseling Genetic screening method Goals Grant Hereditary Breast and Ovarian Cancer Syndrome Inherited Institution Insurance Knowledge Medical Genetics Numbers Outcome Probability Randomized Clinical Trials Research Research Design Research Personnel Resources Risk Source Staging Standards of Weights and Measures Stigmatization Testing United States National Institutes of Health Utility Theories Variant Woman base efficacy evaluation mutation carrier prevent psychological distress satisfaction

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项目摘要

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Since the identification of specific gene mutations (BRCA1/2), responsible for much of the inherited risk of breast cancer, genetic testing has become increasingly widespread. There are a number of benefits associated with testing, including that the information may help women decide upon specific steps to prevent the disease or detect it at earlier, more curable stages. However, there are also a number of risks associated with testing, including the possibility of insurance discrimination, stigmatization and psychological distress. Women considering testing need to understand the risks and benefits of testing in order to make decisions regarding testing which are both informed and consistent with their personal goals and needs. In addition, women need to understand complex genetic and medical information (e.g., probability of being a mutation carrier) before making their decision. Although genetic counseling is provided to assist women with their decision, African American women may need additional assistance with their decision for at least three reasons. First,. DNA sequencing variants of uncertain significance are more common in African Americans and therefore more difficult to interpret. Second, African American women may have less information about genetic testing. Third, as a result of cultural heritage, African American women considering genetic testing may have to address complex attitudes toward testing. Therefore, the goal of the proposed research is to develop and evaluate an interactive CD-ROM based decision-aid for African American women whose personal and/or family histories of cancer are suggestive of a hereditary breast-ovarian cancer syndrome. We propose formative research designed to develop the interactive CD-ROM. After development of the CD, we will conduct a preliminary evaluation of efficacy. This efficacy evaluation will consist of a randomized clinical trial which will compare Standard Genetic Counseling (SGC) to an enhanced genetic counseling condition that consists of the Individualized Decision Aid (IDA) delivered in conjunction with SGC. The IDA will be based, in part, on Subjective Expected Utility Theory. Outcomes will focus on the short-term efficacy of the IDA at increasing knowledge, decreasing decisional conflict, and increasing satisfaction with the actual decision. Hypothesis: The goal of the proposed research is to develop and evaluate an interactive CD-ROM based decision-aid for African American women whose personal and/or family histories of cancer are suggestive of a hereditary breast-ovarian cancer syndrome, which will increase knowledge decrease, decisional conflict and increase satisfaction with the actual decision to undergo genetic testing and counseling for BRCA 1/2.

该副本是利用众多研究子项目之一由NIH/NCRR资助的中心赠款提供的资源。子弹和调查员（PI）可能已经从其他NIH来源获得了主要资金，因此可以在其他清晰的条目中代表。列出的机构是对于中心，这不一定是调查员的机构。由于鉴定了特定基因突变（BRCA1/2），因此造成乳腺癌的大部分风险，基因检测变得越来越普遍。与测试有关的好处有很多好处，包括这些信息可能有助于妇女决定预防该疾病或在更早治愈的阶段检测到该疾病的特定步骤。但是，还存在许多与测试有关的风险，包括保险歧视，污名化和心理困扰的可能性。考虑测试的妇女需要了解测试的风险和好处，以便做出有关测试的决定，这些决策既适合且符合其个人目标和需求。此外，在做出决定之前，妇女需要了解复杂的遗传和医学信息（例如，成为突变载体的概率）。尽管提供了遗传咨询以帮助妇女做出决定，但非洲裔美国妇女可能至少出于三个原因需要额外的帮助。第一的，。在非裔美国人中，具有不确定意义的DNA测序变体更为普遍，因此更难解释。其次，非洲裔美国妇女的基因检测信息可能更少。第三，由于文化遗产，考虑基因检测的非裔美国妇女可能必须解决对测试的复杂态度。因此，拟议的研究的目的是针对非裔美国妇女开发和评估基于CD-ROM的互动性决策AID，其个人和/或家庭癌症的历史暗示了遗传性乳腺癌综合征。我们提出了旨在开发交互式CD-ROM的形成性研究。开发CD后，我们将对功效进行初步评估。该功效评估将包括一项随机临床试验，该试验将将标准遗传咨询（SGC）与增强的遗传咨询条件进行比较，该疾病由与SGC结合的个性化决策援助（IDA）组成。 IDA将部分基于主观的预期效用理论。结果将集中于IDA在越来越多的知识，减少决策冲突以及对实际决策的满意度上的短期疗效。假设：拟议的研究的目的是为非洲裔美国妇女开发和评估基于CD-ROM的互动性决策AID，她们的个人和/或家庭历史暗示了遗传性的乳腺癌综合征，这将增加知识减少，决策性冲突并增加对BRCA 1/2进行基因测试和咨询的实际决策的满意度。