THE IMPACT OF ABLEIST PERCEPTIONS IN THE PRENATAL GENETIC TESTING PROCESS

Abstract

With the rapid advancement of genetics, prenatal genetic testing has become a mainstream process within prenatal care. Prenatal genetic testing aims to be a non mandatory process that allows for premature detection of genetic abnormalities including autosomal chromosome aneuploidies, sex chromosome aneuploidies, copy number variants, microdeletions, and polymorphisms that ideally allow for prospective parents to be more informed about the genetic condition of the fetus, allowing for better reproductive choice and more informed decision making on how to proceed with the pregnancy. Aside from the common ethical concerns, how the discrimination against the disability community impacts the prenatal genetic testing process is largely unacknowledged. Ableism is deep-rooted in society, and related discriminatory ideas have been perpetuated by society. The in utero identification of potential disabilities can be negatively influenced by inaccurate disability stereotypes, causing both medical professionals and patients involved to perceive a disabled fetus as tragic, worthless, and incapable of a fulfilling life. Powerful health organizations often exhibit ableism through their missions to reduce and eliminate disability, and efforts to eliminate entire communities of particular disabilities identifiable via genetic testing have already commenced. This thesis aims to provide a comprehensive analysis of how ableist perceptions in prenatal genetic testing have the potential to eliminate certain disabilities from birth, to spread false information regarding quality of life of a disabled person, to repeat harmful themes of eugenics from the past, and to validate the obvious disability discrimination within the medical field that leads to massive health disparities. In order to proceed with prenatal genetic testing appropriately, the medical field must recognize and resolve disability related health disparities, integrate the social model of disability, develop confidence in accurately characterizing disability and treating patients with disabilities, and improve availability of genetic services and educational communication with patients. Further investigation of ableism within the prenatal genetic testing process through guided research could better identify how to restrict the damaging repercussions of disability discrimination within the prenatal genetic testing process.