Modern Genetic Testing in Pediatric Critical Care Environment

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DESCRIPTION (provided by applicant): The long-term goal of this research program is to determine sound social and ethical criteria for pediatric critical caregivers to provide recommendations for acute diagnostic or therapeutic genetic testing for their patients' families. The genetic testing for acute diagnostic or therapeutic indications in pediatric patients admitted to pediatric intensive care units poses clinical, ethical and social challenges that may differ from genetic testing in other clinical settings such as family planning, prenatal counseling or elective testing. This project seeks to understand--and to formulate a basis for empirical study of--several contrasting sets of social facts/behaviors and ethical norms. The first comparison is between the decision-making process in the pediatric intensive care unit (PICU) and the process in genetic testing and counseling. The second potential contrast is between "genetic testing" to produce diagnostic information and to produce results of immediate clinical relevance. We hypothesize that parents and clinicians will describe practical, social and ethical concerns and barriers to genetic testing in a critical care environment in the modern era. In order to determine the relevant domains in clinical decision-making in the pediatric critical care environment, we propose three specific aims. Specific Aim 1: Characterize the knowledge and attitudes of surrogate decision makers (SDM) of PICU patients, critical care practitioners, geneticists and genetic counselors about the application of genetic testing in the modern era in the pediatric critical care environment. Specific Aim 2: Describe the dynamics and influences of SDM decision-making while their child is in critical care, considering individual, interpersonal, familial, cultural, racial, ethnic, religious and environmental (including provider-family interaction and communication) factors that may influence how families contemplate and negotiate complex treatment decisions. Specific Aim 3: Develop a conceptual model that delineates the factors influencing decision-making related to genetic testing in the modern era in pediatric critical environment. The purpose of this exploratory study is to generate preliminary data for development of broader-based investigation in a national pediatric intensive care unit network (http://www.nichd.nih.gov/research/supported/cpccrn.cfm ) and an RO1 grant submission.