GESTIÓN EN SALUD PÚBLICA: BioEdge: Is killing the disabled ‘eugenics’, or just a merciful release?

domingo, 28 de julio de 2019

BioEdge: Is killing the disabled ‘eugenics’, or just a merciful release?

BioEdge: Is killing the disabled ‘eugenics’, or just a merciful release?

Bioedge

Is killing the disabled ‘eugenics’, or just a merciful release?

by Michael Cook | 28 Jul 2019 |

Eugenics is not a word to be trifled with. It evokes the horror of Nazi atrocities during World War II as well as widespread human rights violations in the early part of the 20^th Century in the United States, Canada and some European countries.

But, contend the authors of a special issue of the Journal of Policy and Practice in Intellectual Disabilities, killing the disabled because they are disabled must be called eugenics. The authors cover a number of areas, too numerous to summarise. But here are few memorable points:

Yes, euthanasing the disabled is eugenics.

“… a conception of what our culture takes to be a human life properly so called appears to be at odds with the condition of IDD. To the extent that this happens to be the case, empirically, there is truly a link with what the supporters of the “old eugenics” believed in the late 19th and early 20th century. The link regards the justification of terminating human lives affected by [Intellectual and Developmental Disabilities] in current medical practices as described in this article. Ultimately, these practices appear to be driven by the view that these lives of poor quality are in defiance of what a human life properly so called is like.”

Euthanasia is an easy way out for society

The difficulty with legalized euthanasia is that it becomes normalized, as we have seen. This makes it perhaps all too easy for people to request euthanasia, and to be granted such a death as a “way out” of painfully difficult situations and circumstances, rather than addressing underlying issues of inequality and a lack of ade- quate support for people with very complex needs.

Life with disability can be a good life

The new eugenics appears to take a perspective of disability that is no longer espoused by the international disability com- munity. In short, the new eugenics perspective assumes that dis- ability is a problem that we would be better off not to have, and that people with disabilities and their families do not enjoy good quality of life. Our current philosophical and human rights perspective on disability, best articulated by Disability Studies, views disability as a viable and valuable aspect of human social diversity, and people with disabilities as equal and important members of society. It asserts that people with ID can and do live good quality lives, and that having an intellectual disability by no means automatically signifies a poor quality of life.

More research is needed into Down Syndrome

There is still much to learn about Down syndrome and its impact on the individual and those sharing their lives. These studies have important influences on family life, education, health, and social inclusion. All lives have value. All of us, including those with Down syndrome, enrich the world by hav- ing lived. Understanding that lived experience and sharing the findings is the work of researchers in the field of Down syn- drome, and there is much more work to be done.

Euthanasia and assisted suicide (EAS) are not just about autonomy

A person’s request for EAS is a claim on at least one other human being. The requestor is asking this person to affirm the requestor’s judgment that his or her life is not worth living and to act on that shared judgment. Whether one performs voluntary or non-voluntary euthanasia, the value judgment required of the performer of EAS is the same: in both, the person who provides the EAS must affirm a value judgment about the person’s life—it is not worth living.

Eugenics is not progress

It seems imprudent to make judgments about the lives of people with disabilities at the present time when those judgments may well seem ill-advised in the years to come. In short, we may look at a newborn who has physical and mental challenges and think it is better for that infant and her family not to have to face a life of struggle and suffering ahead. But in the future, struggle and suffering may not be the case at all for her or her family. We simply do not know what benefits progress may bring.

What we do know is that over the course of human history, progress appears to drive onward relentlessly. We can only assume this will continue, and it seems wise to judge our current actions, such as whether or not to enable new eugenics practices, within the context of understanding and forecasting what human progress may bring in the future.

Michael Cook is editor of BioEdge

What's in a name? Does it make a difference if (by way of example) the widespread abortion of unborn children with Down syndrome is called "eugenics"? A number of bioethicists deny that it is, even though the rates of termination reach 90% if a diagnosis is made before birth. From their point of view, "eugenics" is a word reserved for Nazi atrocities. The destruction of children with Down syndrome is not being carried out by Nazis, ergo, it is not eugenics.

A number of bioethicists writing from a disability perspective disagree. We have presented some of their arguments in a special issue of the Journal of Policy and Practice in Intellectual Disabilities. They have a refreshingly different opinion on this contentious topic.