Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study

• Published in: Journal of genetic counseling Vol. 27; no. 6; pp. 1360 - 1373
• Main Authors: Roadhouse, C., Shuman, C., Anstey, K., Sappleton, K., Chitayat, D., Ignagni, E.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.12.2018; Blackwell Publishing Ltd
• Subjects: Attitudes; Biomedical and Life Sciences; Biomedicine; Childbirth & labor; Children with disabilities; Clinical decision making; Clinical Psychology; Community; Content analysis; Data processing; Decision making; Disability; Ethics; Experiential knowledge; Family planning; Genetic counseling; Gynecology; Human Genetics; Medical diagnosis; Original Research; Parenthood; Parents & parenting; People with disabilities; Prenatal care; Prenatal diagnosis; Public Health; Qualitative research; Termination; Disability; Attitudes; Genetic counseling; Parenthood; Prenatal diagnosis; Experiential knowledge
• ISSN: 1059-7700; 1573-3599
• DOI: 10.1007/s10897-018-0265-1

Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and clinical genetics communities. Varying opinions exist amongst the disability community: some value genetic services while others are opposed. However, there is limited research exploring the opinions of individuals with a disability regarding issues related to reproduction and genetic services in the context of personal experience. This exploratory qualitative study involved interviews with seven women and three men who self-identify as having a disability. We sought to gain their perspectives on experiences with disability, thoughts about reproduction and parenting, and perceptions of genetic services. Transcripts of the interviews were analyzed thematically using qualitative content analysis. Data analysis showed that societal views of disability affected the lived experience and impacted reproductive decision-making for those with a disability. It also showed differing interest in genetic services. Concerns about the perceived collective implications of genetic services were also raised. These findings contribute to the understanding of the disability perspective toward reproductive decision-making and genetic services. A further goal is to promote a meaningful dialogue between the genetics and disability communities, with the potential to enhance the genetic and reproductive care provided to individuals with disabilities.