Abstract

Anticipating ethical issues has been an ongoing topic in the field of bioethics, especially in the case of genomics technology. Specifically with genetic testing, there is a growing concern about testing for risk factors that only indicate the possibility of developing a given condition. This project explored the potential ethical issues if genetic testing for risk factors for specific learning disabilities/difficulties (SLDs) were to be introduced. These potential issues are explored by considering perspectives from those with and without direct, lived experiences of having an SLD. This research utilizes a mixed method approach, exploratory sequential design, incorporating both qualitative and quantitative studies to determine what forms of genetic testing are opposed and supported in the context of SLDs. The qualitative study focused on conducting semi-structured interviews with those with SLDs and the parents of those with SLDs. The interviews explored these key groups of individuals with lived experiences with an SLD and their opinions on genetic testing for SLDs. They yielded varying perspectives on both lived experiences and genetic testing, demonstrating that direct experiences with an SLD were used when evaluating genetic testing. A quantitative study was developed based on this premise and additional information gleaned from the qualitative data. An online survey was designed to elicit responses from those with and without experiences with an SLD. This study indicated that various aspects of lived experiences, such as having an SLD or being a parent or guardian of a kids with or without a SLD, impacted respondents’ views on genetic testing. The data provided valuable insight into potential relationships between lived experiences and opinions on genetic testing for SLD, with the data seeming to indicate that this technological development may be a significant issue for society. Therefore, the application of genetic technology for SLDs must be considered further.