Why parents consent to their children’s participation in genetic research: A study of parental decision making

Why parents consent to their children’s participation in genetic research: A study of parental decision making
Kumari S, Bhatia T, Mishra NN, Kumari N, Narayanan SS, Malik D, Deshpande SN
Indian journal of medical ethics, October-December 2019
Abstract
Parents need to be asked to provide informed consent on behalf of their child for participation in genetic research. Decision making for such parents is difficult because ethical challenges in paediatric genetic research studies are different from similar adult studies. This paper focuses on interviews conducted with parents who were asked to consent to their children’s participation (or not) in a genetic research study of intellectual disability and/or autism.

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