By Dr David KingDirector: Human Genetics Alert. Presentation at 'Genetics and Law' Conference, Commonwealth Institute London, 19 November 2002
A spectre is haunting the genetics revolution, the spectre of eugenics. It sometimes seems that the word is so frightening that people adopt a strategy of silence. Yet whether the issue is cloning, germline engineering, genetic selection (prenatal or preimplantation), genetic discrimination or genetic determinism and behavioural genetics, the prospect of a new eugenics cannot be so easily dismissed.
In focusing on eugenics, my aim is not to attack geneticists, to suggest any conspiracies or to suggest that human genetics research should be stopped. However, it will not help to keep looking in the other direction. In fact, nothing is more certain to create the same kind of public backlash that we have seen with GM food. If we want the benefits of human genetics research it will be necessary to pay attention to the whole set of social, historical, political and economic forces which will tend to drive eugenic outcomes. According to many commentators, we already have eugenic and discriminatory legislation and social practices. Some of these, such as pre-natal screening programmes, are seen as beneficial by many - the aim is not to ban such practices but to work towards a situation where they are seen as unnecessary. We need a whole range of policy measures, education, legislation, guidelines and research policies that limit and reduce current and future eugenic tendencies.
In order to talk about eugenics, we need to understand what it is. According to the conventional account, eugenics is right-wing and authoritarian and more or less disappeared after 1945. In fact, eugenics laws were passed in countries with all shades of political and economic regimes, and today in still (at least nominally) Communist China, more people live under eugenics legislation than ever before. The response of the international community, and of geneticists to the Chinese legislation has been shockingly inadequate.
Neither is it essential that eugenics is coercive. Francis Galton, the founder of the eugenics movement, and many others, always advocated persuasion and incentives rather than coercion. In fact, a eugenics driven by individual choices will be much more effective than coercion, which has now acquired a very bad reputation.
In the current situation, eugenic attitudes persist amongst doctors, geneticists and the public at large. People are increasingly intolerant of imperfection, as the cosmetic surgery boom shows. Thus, while we must certainly protect women's right to choose termination of pregnancy, we should recognise that in the existing social and economic climate, choice is far from free. For those who want to preserve choice, there is a moral responsibility to work towards the elimination of eugenic social and economic forces. We must not allow the libertarian expansion of women's right to choose termination become a general consumerist right to choose and manipulate our children's characteristics without consideration of the social consequences of our actions. At present, the pervasive demands for more autonomy in reproduction effectively collude with ongoing eugenic trends.
A shopping list of measures to counter eugenics
1. Legislation
Bans on reproductive cloning, germline genetic engineering, sex selection, genetic discrimination and over-the-counter genetic testing. Reform of discriminatory abortion laws. Protection of genetic privacy.
2. Democratic regulation
There should be democratic regulation over practices such as prenatal and pre-implantation genetic diagnosis, and over genetic testing within public health services. Such regulation should cover ethical and social implications, not merely safety and quality aspects.
3. Policy measures
In order to change the social and economic context, national policies should emphasise inclusion and support for disabled people, and counter trends towards more medicalisation and technologisation of reproduction. More funding should be directed towards public health approaches to preventing disease and disability.
4. Professional guidelines
Genetic counselling should be explicitly anti-eugenic. Genetic testing should only be offered for serious, life-threatening disorders. Parents should be able to have direct access to information from people with disabilities.
5. Education
The government should fund disability equality education for all, especially doctors. Education should also aim to counter genetic determinism.
6. Research policy
There is a need for a re-evaluation of the focus on genetic causes of disease and the overemphasis on genetics in biology. Research funding must be democratised.
Public funds should not be devoted to research cloning, germline genetic engineering, the enhancement of normal characteristics. There should be a review of funding of behavioural genetics.