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MOCA Time - Ethics
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Lisa and Andi discuss how new advances in genetic testing and personalized medicine raise ethical issues for providers and families.
Informed consent is the voluntary agreement of an individual who has the legal capacity to give consent whereas assent is the term used to express willingness to participate by persons who are by definition too young to give informed consent.
The American Academy of Pediatrics (AAP) supports the mandatory offering of newborn screening for all children.
The AAP does not support routine genetic testing for carrier status for children and
adolescents. Carrier screening is available for a limited number of diseases such as Tay-Sachs disease, muscular dystrophy, sickle cell anemia, cystic fibrosis, and thalassemia major.
Predictive genetic testing for adult-onset conditions generally should be deferred unless an intervention initiated in childhood may reduce morbidity or mortality.
The use of direct-to-consumer and home kit genetic testing of children is discouraged by the AAP given the lack of lack of oversight, accuracy, and interpretation.