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

描述(由申请人提供)：具体目标：1.评估招募儿童癌症年轻成年幸存者(YASPC)参加与遗传学、基因测试和基因组研究相关的态度、信念和预期行动的多学科研究的可行性；2.采访40名患有各种儿科癌症的年轻人的多机构样本，其中一半患有癌症被证明是由于遗传易感性(Li-Fraumeni综合征)，另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，*他们愿意将遗传物质捐赠给基因组研究的相关因素，以及*他们对父母代理允许使用未成年子女的DNA进行基因测试和基因组研究的态度，3.利用这些采访为制定一份关于年轻成人幸存者的兴趣、态度和行动的大规模研究问卷提供信息：遗传学(咨询、测试)和基因组研究参与，最终将通过儿童肿瘤学小组或在儿童癌症幸存者研究人群中进行。这项大规模研究的数据最终将被用于向研究人员提供信息，并有助于为儿科癌症幸存者编写关于遗传咨询和测试以及基因组研究的教育材料4.利用这一试点项目的数据，了解幸存者对父母为利用其子女的DNA进行基因测试或基因组研究提供代理许可的权利的态度，为关于儿童基因测试的辩论提供信息，并仔细规划未来涉及父母和未成年子女在基因测试和基因组研究背景下对同意和同意的态度的研究。 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，并将被提供基因干预的选择。评估年轻的儿科癌症幸存者对遗传性癌症和对后代的风险的关切、他们的相关遗传知识、对遗传咨询和检测的态度、参与基因组研究和代理父母对捐赠儿童DNA的许可，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。

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.