Screening awakens spectres of the past - North American and European history of eugenics

Confronting the eugenic pasts of North America and Europe is a painful but crucial experience for shedding light on today's debate.

For almost half a century eugenics - literally the science of "improving" the gene pool - has been equated with the horrors of Nazism. While German geneticists such as Benno Muller Hill have sought to confront the scientific community's complicity with the Nazis, systematic scrutiny of eugenic policies in other countries has long been neglected.

Historians have recently filled the gap to offer a clear, if depressing, picture of cultural and political support for eugenics in North America and in many European countries from the start of the 20th century to the 1970s. Industrial barons and political elites had predictably little sympathy for the socially disadvantaged who were the targets of eugenic policies. Surprisingly, eugenics also attracted considerable interest among welfare reformers, Marxist and socialist intellectuals as well as feminists convinced that science should help the state in fostering a genetically "fit" population. Some favoured negative eugenics, seeking to limit the production of the "unfit"; others opted for positive eugenics to encourage the "fit" to have more children.

Once the horrors of Nazism were widely known, many countries were careful to avoid using the word eugenics even though they continued to practice it. These "population policies" mostly took the form of the compulsory sterilization of "feeble minded" women. Racism led to African American women being grossly over-represented among the 60,000 people forcibly sterilized in several American states from 1907 to 1960. In Scandinavia, political leaders and geneticists adopted state policies for compulsory sterilization out of concern that the emerging welfare state would encourage the "unfit" to reproduce and so reduce the quality of the national stock. In Sweden alone, 63,000 people, 90 per cent of them women, were sterilized between 1934 and 1975. Norway, a much smaller country, sterilized 48,000 in the same period. By contrast, British and Dutch geneticists and policy-makers adopted voluntary sterilization together with the mass institutionalization and segregation of the "feeble-minded".

The silence surrounding these painful chapters in history is not surprising. It takes a dour courage to unearth the horrors of any nation's past. In Sweden, for example, the press first sparked public outrage over eugenics in the 1970s. Yet it wasn't until 1996 that the government agreed to compensate the women who suffered. Today's renewed interest in the past stems from founders of the Human Genome Project (HGP). From the project's conception in 1985, leading scientists like James Watson, co-discoverer of the structure of DNA, saw the need publicly to confront this sinister past to prevent the shadow of the old state-controlled eugenics from impeding the progress of the HGP. As a result, they set aside part of the three-billion-dollar research budget to study not just the past but the social, legal and ethical implications of current research. Many scientists are acutely aware that new forms of eugenics risk arising with new developments in the field of genetics.

Fears of growing stigmas

Today geneticists are generally very careful to avoid any links to state-controlled eugenics by adopting a new approach with a Janus-like posture. Facing the patient - the would-be parent - they provide informed choice about DNA testing. Facing the state, they promise that fewer disabled children will be born. However, as more foetuses are screened for a growing range of conditions, many voices within the disability movements argue that "testing" amounts to searching for the "abnormal". This "search" steadily reduces our notions of what it is to be "normal", and this, activists say, will intensify the stigmatization of all disabled people.

Some activists have come close to an absolutist opposition to all DNA testing to prevent women from aborting so-called "abnormal" foetuses. This position has predictably raised serious concern in the global movement of women struggling to control their own fertility. Indeed, the disability movement can look like an ally of pro-life groups. Yet it is possible, as disabled feminist groups have shown, to share the disability movement's concerns and still defend women's reproductive rights.

The "genetically approved"

To begin with, it is crucial to recognize that despite the proliferation of DNA tests - each patented and profit-yielding - genetics has so far failed to fulfill its vaunted promises of gene therapy. Doctors are screening for conditions and disorders which they cannot treat. So abortion is often presented as treatment. Meanwhile a good mother-to-be is expected to accept every test she can either afford or the state provides. For many bioethicists, feminists and disabled rights activists, this proliferation of DNA tests opens the way to "consumer eugenics" which in the guise of offering greater reproductive choices in practice applies pressure to select the "genetically approved".

To assure truly free reproductive decision-making, it is crucial to ask: who benefits from the tests - individuals or companies selling them? For most women - not all - a DNA test which can accurately indicate a terrible genetic disorder in the foetus enhances, even if sadly, her ethical choices. But what about the possible proliferation of DNA tests for relatively minor genetic disorders, like deafness or restricted stature?

Another major ethical issue lurks in the proliferation of DNA testing: by focusing on genetic weaknesses, we may neglect environmental factors, like poverty. American sociologist Troy Duster points out that the most effective way - in both medical and economic terms - to promote the birth of healthy newborns lies in helping poor women eat properly during pregnancy. In the state of California, more infants suffer from the serious and often fatal health problems caused by low birth weight than by genetic disease. For Duster, the state decision to invest in DNA testing instead of anti-poverty programmes opens the "backdoor to eugenics" with painful implications in view of the fact that African Americans are massively over-represented among the poor.

How can we better manage this powerful biotechnology? We can begin by stimulating an informed debate about the possibilities and limits of DNA testing. The public needs a solid information base to take an active part in developing sensitive and effective regulatory systems. Screaming headlines announcing "designer babies" in which fantasy parents choose the height, intelligence, looks and behaviour of their future offspring will do little to help us resolve thorny ethical questions arising. Instead, we might begin by learning from the two countries where the public trusts its government most when it comes to biotechnology, Denmark and the Netherlands. It is not by chance that they have done the most to manage these technologies democratically.

Timeline

1840-1850: The start of modern embryology. The Estonian Karl Ernst von Baer describes the first stages of the formation of an embryo.

1866: A Czech monk, Gregor Mendel, develops laws of heredity after experiments with peas.

1875-1883: A German anatomist, Walther Flemming, counts the number of human chromosomes. He finds 24 pairs, a figure amended to 23 by the Indonesian scientist Joe-Hin Tjio in 1956.

1905: "Mendelism", the study of heredity, is renamed "genetics" (from the Greek word genetikos, meaning generate) by the British biologist William Bateson.

1953: Biologists James Watson (U.S.) and Francis Crick (UK) discover the "double helix" structure of DNA. This marks the real beginning of molecular genetics, which expresses genetic information in physico-chemical terms.

1973: The first experiments in human cloning by dividing an embryo. Also the first trans-genesis, the artificial transfer of genetic material from one species to another. The age of genetic engineering begins.

1978: The birth in Britain of Louise Brown, the first test-tube baby, conceived by in vitro fertilization.

1990: The Human Genome Project is launched to locate and identify all the genes of human DNA before the year 2003.

1995: Mark Hughes makes the first clones of human embryos by transferring the nucleus, destroying them after a few weeks.

1997: British embryologist Ian Wilmut announces he has cloned a sheep, which he calls Dolly, from an "adult" cell (see pages 20-21).

Hilary Rose, Professor of Physic (medical ethics) at Gresham College, London. Author of Love, Power and Knowledge: Towards a Feminist Transformation of the Sciences (Cambridge Polity, 1994)

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