Keeping the Backdoor to Eugenics Ajar?: Disability and the Future of Prenatal Screening

Autism Scientists’ Reflections on the Opportunities and Challenges of Public Engagement: A Qualitative Analysis

“…This literature also notes that many autistic individuals have numerous ethical concerns with scientific research (Daley et al 2013). As is the case in other areas (Shakespeare 1995; Thomas and Rothman 2016), many of these concerns orient around the possible eugenic potential of research leading to pre-natal diagnostics or autism cures. These are not perspectives held by all individuals, however, and fundamental disagreements within the autistic community mean that consensus on ‘acceptable’ research is unlikely and that various democratic mechanisms need to be forged in order to determine appropriate scientific responses to concerns raised (Russell et al 2017).…”

Genetic Responsibility in Germany and Israel

“…Due to its special characteristics, NIPT has heightened the social and bioethical debate that on the one hand argues that prenatal testing supports the autonomy of prospective parents (Chen/Wasserman 2017), and on the other criticises it as a new form of eugenics (Thomas/Rothman 2016). The current controversy is by no means new and has accompanied prenatal testing since its introduction in the 1970s .…”

Attitudes of Israeli parents of children with Down syndrome toward non‐invasive prenatal screening and the scope of prenatal testing

“…The test was found to have a sensitivity of 99.4 and specificity of 99.9 for trisomy 21 (Mackie, Hemming, Allen, Morris, & Kilby, 2017). In recent years, various disability rights groups have protested against the routinization of NIPS, for example in the recent campaign titled "Don't Screen Us Out" (Ravitsky, 2017;Thomas & Rothman, 2016). However, little research has investigated whether the approaches of parents of children with DS toward prenatal screening in general and NIPS in particular are indeed in line with those of disability rights organizations that have launched such protests.…”

“…Because of its unique features, NIPS has reinforced conflicting social and bioethical perspectives, including support of "procreative autonomy" (Savulescu, 2001), criticism of a new form of eugenics undermining moral equality (Habermas, 2003;Sandel, 2007;Schües, 2014;Thomas & Rothman, 2016), commodification of "babies by design" (Congregation, 2008), or promotion of parental desires for a particular form of family (Franklin & Roberts, 2006). This study focuses on the Israeli public, whose "search for the perfect baby" (Remennick, 2006) arguably takes on unique cultural meanings considering the effects of the Holocaust and the challenges of national survival in the face of on-going military conflicts (Chemke Juan & Steinberg, 1989).…”