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

Abstract

In this paper I argue that selective abortion for disability often involves inadequate counselling on the part of reproductive medicine professionals who advise prospective parents. I claim that prenatal disability clinicians often fail in intellectual duty-they are culpably ignorant about intellectual disability (or do not disclose known facts to parents). First, I explain why a standard motivation for selective abortion is flawed. Second, I summarize recent research on parent experience with prenatal professionals. Third, I outline the notions of epistemic excellence and deficiency. Fourth, I defend culpable ignorance as the best explanation of inadequate disability counselling. Fifth, I rebut alternative explanations. My focus is pregnancies diagnosed with mild or moderate intellectual disability.

The role of knowledge and medical involvement in the context of informed consent: a curse or a blessing?

“…On a more wider scale, information concerning screening and testing for disabilities has often been subject to what can be defined as a ‘medical gaslighting’, with a strong framing effect in the clinicians’ hands. This has been often translated into the provision of negative information (Gould 2020 ; Guon et al 2014 ) concerning the medical risks connected to raising a child with a disability, with little if any room for a wider look, beyond its pure clinical terms, at the experiential reality of a disability for both children and parents. The latter, though not in the strictly medical remit of clinical expertise, is still interconnected with the disclosure process and asks clinicians to at least avoid making assumptions on behalf of the parents and/or offer opportunities for a wider social support during the decision-making process.…”

“…One key challenge in navigating the 'ocean' of information has been the often over-medicalization of information. Knowledge in the disability context has more often than not been framed as a curse (Gould 2020;Robinson 2019) in the hands of clinicians. If this is partially to be attributed to the technical, and sometimes complex, nature of available information, this is also due to the prominent role that clinicians have exercised in the disclosure process.…”

Why Intellectual Disability is Not Mere Difference

“…David cares about his disabled life as much as Matt cares about his non-disabled life-they are morally equal persons. General claims about lower quality of life for people with ID do not justify disability-based selective abortion, denial of life-saving treatment, encouragement of assisted suicide, or discriminatory rationing of scarce resources (Gould 2019;2020c;2020d).…”