In recent years, bioethical discourse around the topic of ‘genetic enhancement’ has become increasingly politicized. We fear there is too much focus on the semantic question of whether we should call particular practices and emerging bio-technologies such as CRISPR ‘eugenics’, rather than the more important question of how we should view them from the perspective of ethics and policy. Here, we address the question of whether ‘eugenics’ can be defended and how proponents and critics of enhancement should engage with each (...) other. (shrink)

When the Human Genome Project (HGP) was launched, our genome was presented as our ‘blueprint’, a metaphor reflecting a genetic deterministic epistemology. Eventually, however, the HGP undermined rather than strengthened the understanding of genomes as blueprints and of genes as ultimate causal units. A symbolical turning point was the discovery that the human genome only contains 22,500 genes. Initially, this was seen as a narcissistic offence. Gradually, however, it strengthened the shift from traditional genetics and biotechnology (i.e., gene-oriented approaches) to (...) genomics, i.e. genome-oriented or systems approaches, emphasizing complexity. The 20th century can be regarded as the century of biotechnology and of the gene. Its history demonstrated that the will to know (notably: to know ourselves) has never been a disinterested affair: it is driven by a will to improve (notably: to improve ourselves). In this article it is claimed that, as genomics takes us beyond a genetic deterministic understanding of life, this must have consequences for societal research and debate as well. Policies for self-improvement will increasingly rely on the use of complex interpretation. Therefore, the emphasis must shift from issues such as genetic manipulation and human enhancement to issues involved in governance of novel forms of information. (shrink)

As a result of the publicly funded Human Genome Project (HGP), and an increasing number of private enterprises, a new form of eugenic theory and practice has emerged, differing from previous manifestations. Genetic testing has become a consumer service that may now be purchased at greatly reduced cost. While the old eugenics was pseudoscientific, the new eugenics is firmly based on DNA research. While the old eugenics focused on societal measures against the individual, the new eugenics emphasizes the family as (...) a control agent. Eugenics is now voluntary, with the promise of abortion for those afraid of producing genetically damaged children. The ethical concepts of beneficence, avoidance of maleficence, autonomy, and equity are discussed in terms of aspects of the HGP. One major issue is the need for an ethical system available to health consumers that will empower them and assist in their biogenic decisions. “The concentration on the genes implicated in cancer is only a special case of a general genomania (emphasis added) that surfaces in ... the weekly announcements in The New York Times of the location of yet another gene for another disease. The revealing rhetoric of this publicity is always the same; only the blanks need to be filled in: ‘It was announced today by scientists at [Harvard, Vanderbilt, Stanford] Medical School that a gene responsible for [some, many, a common form of] [schizophrenia, Alzheimer’s, arteriosclerosis, prostate cancer] has been located and its DNA sequence determined. This exciting research, say scientists, is the first step in what may eventually turn out to be a possible cure for this disease.’”. (shrink)

Eugenics casts a long shadow over contemporary genetics. Any measure, whether in clinical genetics or biotechnology, which is suspected of eugenic intent is likely to be opposed on that ground. Yet there is little consensus on what this word signifies, and often only a remote connection to the very complex set of social movements which took that name. After a brief historical summary of eugenics, this essay attempts to locate any wrongs inherent in eugenic doctrines. Four candidates are examined and (...) rejected. The moral challenge posed by eugenics for genetics in our own time, I argue, is to achieve social justice. (shrink)

It may be thought that the title of this paper betrays a regrettable lack of sensitivity and good taste; it is as well, therefore, to explain its origin. Lewis Dexter was, I think, the first sociologist to apply a deviance perspective to the high-grade mentally retarded. ‘On the Politics and Sociology of Stupidity in Our Society’ argues that our discriminatory attitudes to the retarded have deep ideological roots; our social institutions tend ‘automatically’ to penalize stupidity; and repugnance often characterizes our (...) face-to-face interactions with the stupid. The pejorative label ‘stupid’ was justified precisely because identifying the stupid is a ‘commonsense’ rather than a scientific process, although commonsense does not have long to wait before it is bolstered by science. (shrink)