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Genetics, Genomic Research, and Consent: Attitudes of Pediatric Cancer Survivors

遗传学、基因组研究和同意：儿科癌症幸存者的态度

基本信息

批准号：
7293647
负责人：
ANDREA F PATENAUDE
金额：
$ 7.64万
依托单位：
DANA-FARBER CANCER INST
依托单位国家：
美国
项目类别：
财政年份：
2006
资助国家：
美国
起止时间：
2006-09-28 至 2009-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7293647
关键词：
Affect Age Area Atlases Attitude Authorization documentation Belief Biological Cancer Patient Cancer Survivor Cancer Survivorship Cardiac Cessation of life Child Childhood Cancer Survivor Study Children&apos s Oncology Group Clinical Medicine Cohort Studies Consent DNA Data Development Disease Educational Materials Educational workshop Endocrine Enrollment Face Family Cancer History Family history of Future General Population Genetic Genetic Counseling Genetic Materials Genetic Medicine Genetic Predisposition to Disease Genetic screening method Genetics and Medicine Genome Genomics Health Health Insurance Hereditary Malignant Neoplasm Hereditary Neoplastic Syndromes Human Human Genome Individual Informed Consent Inherited Insurance Interview Knowledge Late Effects Li-Fraumeni Syndrome Life Malignant Childhood Neoplasm Malignant Neoplasms Measures Minor Molecular National Cancer Institute National Cancer Institute of Canada National Cancer Policy Board Neurocognitive Parents Patients Pilot Projects Population Predisposing Factor Predisposition Prevalence Proxy Public Health Quality of life Questionnaires Rate Recontacts Research Research Institute Research Personnel Rights Risk Sampling Second Primary Cancers Second Primary Neoplasms Siblings Survival Rate Survivors Technology Testing Toxic effect War base burden of illness cancer genome cancer risk childhood cancer survivor disability gene therapy genome sequencing improved interest mortality multidisciplinary success willingness young adult

项目摘要

DESCRIPTION (provided by applicant): Specific Aims: 1. To assess the feasibility of enrolling young adult survivors of pediatric cancer (YASPC) in a multidisciplinary study of their attitudes, beliefs, and anticipated actions related to genetics, genetic testing and genomic research, 2. To interview a multi-institutional sample of 40 young adult survivors of diverse pediatric cancers, half with cancers demonstrated to be due to hereditary predisposition (Li-Fraumeni Syndrome) and half with no family history of cancer, in order to be able to ascertain, describe, and compare: * their level of knowledge about hereditary cancer, * their interest in genetic counseling and testing, * factors related to their willingness to donate genetic material for genomic research, and * their attitudes towards parental proxy permission for use of a minor child's DNA for genetic testing and genomic research, 3. To utilize these interviews to inform the development of a questionnaire for a large-scale study of young adult survivors' interests, attitudes, and actions re: genetics (counseling, testing) and genomic research participation to be ultimately conducted through the Children's Oncology Group or among the Childhood Cancer Survivor Study population. Data from the large-scale study will ultimately be used to inform researchers and to contribute to the development of educational materials about genetic counseling and testing and genomic research for pediatric cancer survivors, 4. To utilize data from this pilot project on survivors' attitudes towards the rights of parents to provide proxy permission for utilization of their children's DNA for genetic testing or genomic research to inform the debate on the genetic testing of children and to carefully plan future research involving parents' and minor childrens' attitudes regarding consent and assent in the context of genetic testing and genomic research. Relevance to Public Health: As genetics and genomics become core features of clinical medicine, cancer survivors will be increasingly asked to participate in genomic research and will be offered the option of genetic interventions. Assessment of the concerns of young adult pediatric cancer survivors about hereditary cancer and risk to offspring, their relevant genetic knowledge, attitudes towards genetic counseling and testing, genomic research participation and proxy parental permission for donation of children's DNA will inform future research and help develop educational materials to improve informed consent.

描述（由申请人提供）：具体目标：1。评估招募儿童癌症（YASPC）年轻成年幸存者参与多学科研究的可行性，研究他们对遗传学、基因检测和基因组研究的态度、信念和预期行动， 2.采访了40名不同儿科癌症的年轻成年幸存者的多机构样本，其中一半癌症被证明是由于遗传易感性（Li-Fraumeni综合征），一半没有癌症家族史，以便能够确定，描述和比较： * 他们对遗传性癌症的知识水平，* 他们对遗传咨询和检测的兴趣， * 与他们愿意为基因组研究捐赠遗传物质有关的因素，以及 * 他们对父母代理许可使用未成年子女的DNA进行基因测试和基因组研究的态度， 3.为了利用这些访谈，以告知一个年轻的成年幸存者的利益，态度和行动的大规模研究的问卷开发：遗传学（咨询，测试）和基因组研究的参与，最终通过儿童肿瘤组或儿童癌症幸存者研究人群进行。这项大规模研究的数据最终将用于为研究人员提供信息，并为儿童癌症幸存者的遗传咨询和检测以及基因组研究的教育材料的开发做出贡献， 4.利用这一试点项目中幸存者对父母有权代理许可将子女的DNA用于基因检测或基因组研究的态度的数据，为关于儿童基因检测的辩论提供信息，并认真规划今后关于父母和未成年子女在基因检测和基因组研究方面对同意和赞同的态度的研究。与公共卫生的相关性：随着遗传学和基因组学成为临床医学的核心特征，癌症幸存者将越来越多地被要求参与基因组研究，并将获得遗传干预的选择。评估年轻成人儿童癌症幸存者对遗传性癌症和后代风险的担忧，他们相关的遗传知识，对遗传咨询和检测的态度，基因组研究的参与和代理父母允许捐赠儿童DNA将为未来的研究提供信息，并帮助开发教育材料，以改善知情同意。