Parents' Preferences for Return of Results in Pediatric Genomic Research
Autor: | Robert C. Green, Patrick L. Taylor, Ingrid A. Holm, Noelle Huntington, Sarah K. Savage, Sonja I. Ziniel, Elissa R. Weitzman, Jonathan G. Amatruda |
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Rok vydání: | 2014 |
Předmět: |
Adult
Male Parents Gerontology Genetic Research Genomics 0603 philosophy ethics and religion Article Young Adult 03 medical and health sciences 0302 clinical medicine medicine Humans Genetic Testing 030212 general & internal medicine Young adult Child Health Education Genetics (clinical) Genetic testing Motivation Data collection medicine.diagnostic_test Genome Human business.industry Data Collection Public Health Environmental and Occupational Health 06 humanities and the arts Middle Aged Hospitals Pediatric Comprehension Female Human genome Health education 060301 applied ethics Return of results business Boston |
Zdroj: | Public Health Genomics. 17:105-114 |
ISSN: | 1662-8063 1662-4246 |
Popis: | Background: The aim of this study was to ascertain parental preferences for the return of genetic research results on themselves and their children and their choices for genetic research results to receive. Methods: A mail survey was sent to 6,874 families seen at Boston Children's Hospital. The survey included questions assessing the respondents' preferences regarding the types of result they wanted to receive on themselves and their children. Results: Most of the 1,060 respondents ‘probably' or ‘definitely' wanted to receive genetic research results about themselves (84.6%) and their children (88.0%). Among those who wanted to receive results, 83.4% wanted to receive all research results for themselves and 87.8% for their children. When questions about specific types of research results were combined into a composite measure, fewer respondents chose to receive all results for themselves (53.5%) and for their children (56.9%). Conclusion: Although most parents report a desire to receive all research results on a general question, almost half chose to receive only a subset of research results when presented with specific types of research results. Our findings suggest that participants might not understand the implications of their choice of individual research results to receive unless faced with specific types of results. |
Databáze: | OpenAIRE |
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