Work

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

Year: 2019

Type: article

Abstract: Background: 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.Methodology: After oral consent, parents referred to the research team were informed by their treating psychiatrists about the purpose of the study and requested to give written consent.Regardless of their giving or refusing consent to participate, they were requested to participate in an anonymous recorded interview on a specially constructed structured questionnaire regarding their attitude towards genetic studies.Only one of the parents could participate, due to logistic and analytic issues.The study was carried out from August 2011 to March 2015.Results: A total of 84 parents completed the interview which was recorded, translated and transcribed.Majority of the parental participants comprehended the elements of informed consent and said that they understood it properly.Nevertheless, 36% opined that if they refused to participate in the research study, it might affect their child's treatment (the consent form had an Why parents consent to their children's participation in genetic research: A study of parental decision making

Source: Indian Journal of Medical Ethics

DOI: 10.20529/ijme.2019.063