Predictive Genetic Testing for Conditions that Present in Childhood
- 1 September 2002
- journal article
- research article
- Published by Project MUSE in Kennedy Institute of Ethics Journal
- Vol. 12 (3) , 225-244
- https://doi.org/10.1353/ken.2002.0019
Abstract
There is a general consensus in the medical and medical ethics communities against predictive genetic testing of children for late onset conditions, but minimal consideration is given to predictive testing of asymptomatic children for disorders that present later in childhood when presymptomatic treatment cannot influence the course of the disease. In this paper, I examine the question of whether it is ethical to perform predictive testing and screening of newborns and young children for conditions that present later in childhood. I consider the risks and benefits of (1) predictive testing of children from high-risk families; (2) predictive population screening for conditions that are untreatable; and (3) predictive population screening for conditions in which the efficacy of presymptomatic treatment is equivocal. I conclude in favor of parental discretion for predictive genetic testing, but against state-sponsored predictive screening for conditions that do not fulfill public health screening criteria.Keywords
This publication has 26 references indexed in Scilit:
- Early Diagnosis of Cystic Fibrosis Through Neonatal Screening Prevents Severe Malnutrition and Improves Long-Term GrowthPediatrics, 2001
- Psychological consequences of predictive genetic testing: a systematic reviewEuropean Journal of Human Genetics, 2000
- Reproductive decisions after neonatal screening identifies cystic fibrosisArchives of Disease in Childhood: Fetal & Neonatal, 2000
- Wrestling with the Future: Should We Test Children for Adult-Onset Genetic Conditions?Kennedy Institute of Ethics Journal, 1998
- Nutritional Benefits of Neonatal Screening for Cystic FibrosisNew England Journal of Medicine, 1997
- Parents' responses to predictive genetic testing in their children.Journal of Medical Genetics, 1997
- Experience with screening newborns for Duchenne muscular dystrophy in Wales.BMJ, 1993
- Deciding for Others: The Ethics of Surrogate Decision Making.Philosophy and Phenomenological Research, 1992
- Attitudes of parents of cystic fibrosis children towards neonatal screening and antenatal diagnosisClinical Genetics, 1990
- Parents and Children: The Ethics of the Family.The Journal of Philosophy, 1985