Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability

Skotko (2009) and Choi, Van Riper, and Thoyre (2012) report that 92 per cent of pregnancies testing positive for Down’s syndrome are terminated. This statistic may not be accurate: a review of studies (Natoli et al. 2012) indicates that termination rates following prenatal diagnosis vary, with the range averaging from 67 per cent to 85 per cent.

It may be thought that my claim of inadequate disability counseling is based on a very partial look at the existing literature. I disagree: the evidence indicates that my claim is well-supported. As Wasserman (2015, 230) states, “concerns about informed consent and misinformation are widely shared.” These concerns stretch back many years: see Blumberg (1994), Michie (1997), Biesecker and Hamby (2000), Abramsky (2001), Roberts (2002), Cleary-Goldman et al. (2006), Reist (2006), Skotko (2005), and Skotko, Kishnani, and Capone (2009). These concerns remain today: see Klein (2011); Choi,Van Riper, and Thoyre (2012); Farrelly et al. (2012); Nelson Goff et al. (2013); Galst and Verp (2015); and Meredith (2016).

Many of these studies are of people with physical and sensory, not intellectual, disabilities. We can, however, extrapolate from them medical attitudes regarding ID—especially when they are confirmed by research like Klein (2011) and Skotko (2011). Also see Morin (2018), Ormond (2003), Pelleboer-Gunnink (2017), and Ryan and Scior (2014).

Testimonial injustice occurs when prejudice cause us to discredit a speaker’s word—when white police, for example, do not believe a black person (Fricker 2007). In disability contexts, epistemic injustice is a failure to trust a disabled person’s assessment of their own well-being. Kaposy (2018) argues that positive self-reports of life with ID are usually reliable and should not be dismissed as self-deception or adaptive preference.

Savulescu and Momeyer (2000, 129) consider a person with gangrene of the foot. In deliberating amputation, “she is attempting to evaluate a complete state of affairs: how much pain she will experience, whether she will be able to live by herself, visit her grandchildren, and so on. (Importantly, knowing the name of one’s disease and the nature of the operation are less important facts.)” Roberts and Wood (2007) distinguish propositional knowledge (holding true, justified beliefs) from understanding (grasping connections between ideas and seeing how information fits together). Someone may know something about quantum mechanics, for example, but not understand it.

The critical moment may actually come before diagnosis. Prenatal testing to detect fetal anomalies is now part of routine pregnancy care and screening is encouraged by obstetrics organizations. But research indicates that counseling is often inadequate and that parents “back into” prenatal testing with little understanding of its purpose (Sandelowski and Jones 1996; Seavilleklein 2009). Senor and Ville’s 2009 study finds significant professional failure to explain the implications of prenatal testing to pregnant women—and Klein’s 2011 literature review indicates that many women do not make informed choices about undergoing screening and find it hard to refuse testing because it is expected. Many parents are not prepared for adverse findings. When a woman is told that her fetus is at risk for anomaly, McCoyd (2015, 270–271) notes, she is thrust onto the conveyor belt of further testing—“into a myriad of decisions that must be made quickly, under a level of uncertainty as to the severity of many fetal diagnoses.” Informed consent about whether to undergo prenatal testing requires information about their purpose and meaning, their predictive limitations, their possible outcomes, and the consequences of a positive result.