The Elephant in the Room, The Fetus in the Womb: Disability Rights Activists’ Perspectives on Prenatal Genetic Testing and Selective Termination of Down syndrome

Authors

Evangeline Maria Smith, The College of WoosterFollow

Abstract

The vast majority, approximately 75%, of women in the United States who receive a prenatal diagnosis of Down syndrome will choose to terminate their pregnancy. This Independent Study project explores how institutionalization, medicalization, the eugenics movement, and the Disability Rights Movement set the stage for the current ethical debate surrounding prenatal genetic testing technology and subsequent terminations of fetuses with disabling traits, specifically Down syndrome. Disability studies scholars have coined the disability rights critique of prenatal testing and argue that prenatal testing is an act of discrimination in of itself, and that selective termination can be labeled as a new form of eugenics. To see if this critique had practical applications, I interviewed seven individuals who work in the disability field—most of whom are doing activist or advocacy work at a grassroots level. In these conversations I asked about their work and ideologies to better understand the ethical implications that prenatal testing technology and selective termination has on the communities with whom they work. I ultimately found that my contributors echoed similar sentiments to the disability rights critique. I concluded that sharing information that debunks harmful stereotypes surrounding disability and engaging in relationships that work towards full inclusion, prenatal genetic testing can be practiced in a way more in line with disability rights ideals and goals.

Advisor

Craven, Christa

Second Advisor

Kammer, Charles

Department

Religious Studies; Sociology and Anthropology

Recommended Citation

Smith, Evangeline Maria, "The Elephant in the Room, The Fetus in the Womb: Disability Rights Activists’ Perspectives on Prenatal Genetic Testing and Selective Termination of Down syndrome" (2016). Senior Independent Study Theses. Paper 7081.
https://openworks.wooster.edu/independentstudy/7081

Disciplines

Cultural History | Ethics and Political Philosophy | Ethics in Religion | Feminist, Gender, and Sexuality Studies | History of Science, Technology, and Medicine | Special Education and Teaching

Keywords

Down Syndrome, Disability Rights, Prenatal Testing, Selective Termination, Activists, Practical Applications

Publication Date

2016

Degree Granted

Bachelor of Arts

Document Type

Senior Independent Study Thesis