Preimplantation genetic testing and perceptions of disability: A content analysis

Abstract

Preimplantation genetic testing (PGT) is a technique used in tandem with in vitro fertilization (IVF) to identify embryos free of genetic conditions for later implantation. Hundreds of genetic conditions can be tested for though PGT, such as down syndrome, cystic fibrosis, and Duchenne muscular dystrophy. The overall purpose of this study is to understand how disability arising from genetic conditions is characterized in clinical communications surrounding the use of PGT. The specific research questions are to (1) understand how disability is portrayed in online patient-facing PGT texts from fertility clinics and (2) determine if these texts show bias regarding whether or not a patient should have PGT, or raise a child with a disability. Texts (N = 33) were analyzed via content analysis to fill the knowledge gap surrounding how these texts contribute to disability discourse. Two major themes emerged from the data: the importance of normal bodies and a fear of disability. These themes are supported by previous literature, and illustrate that texts portray people with disabilities inaccurately and show bias in relation to disability. The discussion explores these themes in more depth and considers next steps for research, recommendations for PGT texts, and limitations of the study.