Why parents consent to their children's participation in genetic research: A study of parental decision making
| Autor: | Triptish Bhatia, Sunita Kumari, Nagendra N. Mishra, Nupur Kumari, Deepak Malik, Smita N. Deshpande, Sreelatha S Narayanan |
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| Rok vydání: | 2019 |
| Předmět: |
Adult
Male Parents Genetic Research Adolescent Decision Making India Article Developmental psychology Informed consent Surveys and Questionnaires Intellectual disability medicine Humans Child Infant Newborn Infant General Medicine Middle Aged medicine.disease humanities Informed Consent By Minors Child Preschool Research studies Autism Female Patient Participation Psychology |
| Zdroj: | Indian J Med Ethics |
| ISSN: | 0975-5691 |
| Popis: | 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 explicit paragraph denying this consequence). Thematic analysis was conducted on interview narratives and six themes emerged: research as part of treatment, participation for self-interest, prosocial interest, understanding/not understanding the value of written consent, confidentiality is important/not important, no acceptance of genetic origin. DISCUSSION: There were varied reasons for participation by parents. While all said that they understood the nature of informed consent, it appeared that they did not fundamentally do so, even though the research team was physically separated from their treating psychiatrist, and only 84/311 referred, had agreed to participate. Though their understanding of genetic issues around their child’s disorder was limited, they still agreed to participate for altruistic reasons. While the individuals in our sample belonged to lower socio-economic groups, they were well aware of the importance of confidentiality in research, the importance of research, and the stigma around the conditions, but trusted the research team because of the government funding source and the government institution where the research was carried out. |
| Databáze: | OpenAIRE |
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