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

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.
Specific Aims:
-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,
-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
-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,
-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.