SU118 - THE EFFECT OF PARENTAL KNOWLEDGE ON THEIR CONSENT FOR THEIR CHILD'S PARTICIPATION IN GENETIC RESEARCH

Abstract

Background In pediatric genetic research, parents need to provide permission for their child's participation. Parents may view these decisions differently from their own participation. This paper focuses on a qualitative analysis of interviews conducted with parents whose children (autistic or intellectually disabled) were requested to participate in a genetic research study. Understanding how parents make decisions about enrolling their children in genetic research and what they think about receiving their children's individual genetic research results is important for developing effective and appropriate approaches for primary research recruitment. Methods All participants were parents of prospective participants of a genetic study. During the enrollment process, they were asked to participate in a genetic study for their children and informed consent was obtained. Irrespective of whether they agreed or refused to participate, they were asked to record an interview regarding their attitude towards their children's participation in genetic studies. A total of 70 parents were interviewed. The recorded interviews were based on an interview guide, were transcribed and translated into English. We used an iterative approach to the qualitative content analysis of the transcripts and thematic analysis was performed. Results On most of the structured questions, majority of the participants understood the elements of the informed consent. But in spite of written statement in the consent form to the contrary, many felt that refusal to participate might affect their treatment. While majority agreed that research data should be confidential, a substantial number opined that confidentiality of research data is not important. On qualitative analyses, significant themes regarding their attitudes towards research participation were: Research was a part of Government policies; Participation for self-interest; Pro-social interest; Expectation of prevention of illness for next generation; Consent is for trust only. The themes were further elaborated. Other themes were: understanding of genetic research, confidentiality and comprehension of informed consent. Discussion The study revealed different attitudes of parents with regard to genetic research participation. The reasons of participation ranged from prosocial interests to self-interests. Confidentiality and comprehension of informed consent were also predictors of participation in such studies.