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Eugenics and contemporary disability studies

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Thursday, July 14, 2011

Natalie Ball, University of Calgary

This entry is part of a collaborative series on disabilities between the Federation’s Equity Issues Portfolio and the Canadian Disability Studies Association/ Association Canadienne des Études sur l’Incapacité.

People with disabilities often were targeted by the state for eugenic intervention. Such policies and practices continue to impact the lives of people with disabilities. The word ‘eugenics’ often invokes thoughts of forced sexual sterilization mandated by a governing body. It recalls to mind 19th and 20th century ideas about a ‘master’ race, the Holocaust and ‘forgotten crimes’. Yet, eugenics often is seen as a dark era of the past, a regrettable fragment of history, beliefs, ideas and practices from which modern society progressively has distanced itself. But is eugenics truly limited to the past?

Eugenics is not just an historical experience. It is, arguably, a contemporary and future topic of concern for people with disabilities and for disability study scholars. To understand why we need only look at how the concept and practice were understood by Sir Francis Galton, the person who coined the term, and the way in which eugenics practices have changed over time. In his 1883 book Inquiries into Human Faculty and its Development, Galton introduced the term as follows: “the investigation of human eugenics – that is, of the conditions under which men of a high type are produced.”

Galton defined the term in “Eugenics: Its Definition, Scope and Aims,” which appeared in a 1904 issue of the American Journal of Sociology: “Eugenics is the science which deals with all influences that improve the inborn qualities of a race; also with those that develop them to the utmost advantage. The improvement of the inborn qualities, or stock, of someone human population alone will be discussed here.” In the same article, he goes on to explain the purpose of eugenics as follows: “The aim of eugenics is to bring as many influences as can be reasonably employed, to cause the useful classes in the community to contribute more than their proportion to the next generation.”

The aims of eugenics were several-fold: “Its first object is to check the birth-rate of the Unfit, instead of allowing them to come into being, though doomed in large numbers to perish prematurely. The second object is the improvement of the race by furthering the productivity of the Fit by early marriages and healthful rearing of their children.” He goes on to argue that, “Natural Selection rests upon excessive production and wholesale destruction; Eugenics on bringing no more individuals into the world than can be properly cared for, and those only of the best stock.”

Galton gave a broad explanation of how eugenics should be taken up and promoted as an area of knowledge production and dissemination, that is, the role of the academy:

“1. Dissemination of a knowledge of the laws of heredity, so far as they are surely known, and promotion of their further study.”

“2. Historical inquiry into the rates with which the various classes of society (classified according to civic usefulness) have contributed to the population at various times, in ancient and modern nations.”

“3. Systematic collection of facts showing the circumstances under which large and thriving families have most frequently originated; in other words, the conditions of eugenics.”

“4. [Investigation of the] influences affecting marriage.”

“5. Persistence in setting forth the national importance of eugenics.”

Given Galton’s views on eugenics two avenues are available to achieve eugenic goals: first, negative eugenics, that is, reducing the number of so-called undesirable genes within the population or, second, positive eugenics, that is, increasing the number of so-called ‘desirable’ genes within the population. Positive and negative eugenics are far from being an action of the past. What has changed and likely will continue to change is the ‘how’ or the process by which eugenic goals are achieved.

There are various ways in which negative eugenics could be achieved. The possibilities include the prevention of marriage and the prevention of procreation of the so called ‘unfit’. During the eugenics movement in the first half of the twentieth century, tens of thousands of people were sexually sterilized or segregated to prevent reproduction of the ‘unfit’ in the United States alone. In recent times negative eugenic goals could also be achieved through the prevention of the birth of fetuses defined as ‘unfit’ through prenatal genetic testing. More recently the deselection of ‘unfit’ embryos became possible through a combination of preimplantation genetic diagnostics and possible non-selection of an embryo for in vitro fertilization.

Positive eugenic interventions also have a long history as well as contemporary manifestations. In many cultures throughout history, marriages were arranged whereby family history of diseases was often one criterion taken into account. Contemporary manifestations of positive eugenic interventions include germline gene therapies (heritable changes to the genome). In the future, positive eugenic goals might be achieved through the ability to synthesize genomes from scratch, constructing a genetic code base pair by base pair (known as synthetic biology) and growing a human being with that genome using the artificial womb. And they might include genetic enhancement beyond what we see today as ‘normal’.

The above mentioned contemporary practices employable for reaching positive and negative eugenic goals aren’t usually thought of in Western countries in the same way that earlier eugenic practices are, and there are a number of reasons for this. First, and perhaps most importantly, contemporary eugenic practices often are presented as voluntary rather than forced. Unlike the forced sterilization witnessed during the early- to mid-1900s, genetic counseling, genetic testing and gene therapy are, at least in many Western countries, advanced under the narrative of choice and autonomy. The government does not control who has to undergo these procedures or the decisions that individuals make based on the results. (Of course, one could question whether completely free choice truly exists, given societal realities). A second reason is that these technologies operate on an individual basis, without explicitly stating any intention of ‘furthering the evolution of the species’ or ‘improving the human race.’ However, we should recognize that the eugenic idea – trying to create the best human possible in the given circumstances – is still present, at least implicitly.

It is possible to continue to redefine eugenics (e.g. one can claim that government coercion is an essential aspect of eugenics) so that we can claim that contemporary practices of genetic manipulation and deselection based on genetic information are not eugenic. However, that only muddies the waters. If we define eugenics as only being government-controlled mandates for breeding, for example, then we ignore the underlying goal of improving humans that Galton described. Redefining or over-specifying eugenics may prevent a much needed contemporary debate around where the eugenic goal of bettering humans is going and, given this goal, what contemporary and future issues we will face.

There are practices that are going on around us that are eugenic, and we need to consider the consequences. We see, for example, a move towards beyond species-typical abilities beyond the ‘normal’ abilities (e.g. germline genetic enhancement, somatic genetic enhancements, and non-genetic enhancements). This poses an array of new questions. When new enhancements are created, should they be available to everyone, or only to those who are considered to be below the ‘species-typical norm’, or only those who can afford them? Who will be able to afford the ‘enhancement’ treatments?

If technologies that can be used as enhancements are intended for the people labeled as sub species-typical and impaired, will they be able to access them? Enhancements may be unaffordable for some groups, and if only the wealthy can purchase them, then enhancements could add another measurement of inequity and marginalization – between the enhanced versus the unenhanced. Additionally, when enhancements are made available, what counts as ‘too enhanced’? Where do we draw the line? How we choose to answer any of these questions has implications for equity.

Even if they are less visible than they once were, eugenic practices are still present today. With the rapid pace of scientific advances, the number of technologies that can be used for such purposes likely will increase. The questions I have posed here have no straightforward or easy answers. However, we need to begin discussion on these topics; and the need for discussion does not go away by redefining eugenics.

What this analysis suggests is that we need to focus some of our research efforts on better understanding the continuity of eugenics in contemporary society – in particular, how contemporary eugenics can or will impact persons with disabilities, how eugenics may change our conceptualization of disability, and what the implications are for understanding ability difference in all groups of people.

Natalie Ball is a student in the Bachelor of Health Science program, Faculty of Medicine, at the University of Calgary. Her research supervised by Gregor Wolbring was partly supported by a Social Sciences and Humanities Research Council Community-University Research Alliances grant. 

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Equity Matters

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Ableism and disability