The Quiet Progress of the New Eugenics. Ending the Lives of Persons With Intellectual and Developmental Disabilities for Reasons of Presumed Poor Quality of Life

Abstract

This paper considers recent developments in terminating human life affected by intellectual and developmental disability. It brings these developments together under the heading of a progressing eugenics. It argues that the acts under discussion are eugenic with regard to their moral justification, even if not in their intention. Terminating human life in contemporary society is aiming at the alleviation of suffering, not the enhancement of the human gene pool. Three distinct cases are traced in the literature: ending the lives of severely disabled prematurely born infants, terminating pregnancies after positive outcomes of genetic screening and testing, and ending the lives of persons with IDD by means of euthanasia. It is shown from the literature that in each of these cases the justifying reason is the prospective judgment of a ‘poor’ quality of life, which ties these acts to the justification of terminating human life within the history of eugenics. The pervasive judgment of poor quality of life is criticized as ignoring alternative views, most of all the views of persons and families directly implicated who do not consider living with IDD identical with a life full of suffering.

Ethical implications of early genetic diagnosis in an infant with Lesch–Nyhan syndrome

“…The family made an informed, thoughtful decision that they did not wish for their child to experience what they considered a poor quality of life. However, severe intellectual and developmental disability may not be considered poor quality of life for all families and this highlights the need for open and thoughtful discussions to understand each family's values (Reinders et al, 2019). In this case, after many discussions with the clinical team, the family opted for home hospice care for the infant given the severity of his prognosis with a realistic understanding of what such care entails.…”

Citizen Network: advancing inclusion for all

“…In many countries, social services are not working towards inclusion and new forms institutionalisation are emerging (Jackson 2017). There are also disturbing eugenic forces that seek to eliminate people with intellectual disabilities from the world, like the increasing use of tests and abortion for people with Down Syndrome (Reinders et al 2019). It is probably not accidental that resistance to inclusion is growing alongside other negative forces.…”

Limits on quality of life: Who has the answer?

“…Society, on the other hand, which rates successful living as the standard, avoids the discussion on limits to quality of life by labelling it as a medical ethical issue. It has recently been argued that the medical perspective is leading in this discussion and is the deciding factor in giving meaning to quality of life (Reinders et al, 2019). Such statements worry IMD healthcare professionals and caregivers.…”