Imperfection is the stuff of life

Genetic Politics
November 8, 2002

The authors of this book approach the issues raised by genetic knowledge with clearly argued positions that can be illustrated by two quotations. The first is from their introduction: "We do not believe that the world would be a better place without disabled people." The second is from the chapter on "The consequences of choice": "Many disabled people and parents of disabled people report that the major difficulties of having an impairment are to do with the restricted social choices and life chances."

These perceptions determine the authors' approach to human genetics and the way that its knowledge should be used by both individuals and governments.

The first half reviews the way the changing views of genetics influenced government policy in the 20th century. Many readers will be surprised to learn of the rise of eugenics in the UK and the US. Inspired by the thought that it might be possible to "improve" the human race, distinguished biologists formed academic and popular societies to develop and publicise their proposals. The objective was to encourage some people to have more children and prevent others from doing so. Prevention was achieved by either incarceration or sterilisation. Similar programmes were developed in other democratic countries, including Sweden, Denmark and Norway. It is shocking that some aspects of the policy, in only slightly different forms, persisted into the 1960s and 1970s.

The most extreme case was, of course, in Nazi Germany. State policy first prevented some people from having children by sterilisation, then permitted the killing of children and, finally, the killing of adults. The Marriage Health Law of 1935 prohibited marriage if either partner was deranged or had an inherited or venereal disease. Later, Hitler's own office supervised the "mercy killing" of children and adults. The ease with which ordinary Germans became murderers is frightening.

But the appalling events in Nazi Germany should not be allowed to detract from the important point that our current attitudes limit the opportunities of some people. Policies to prevent the birth of children with certain inherited conditions inevitably create in those who are born with a feeling that they are not valued - it is not the policy-makers' intention, but it is the likely effect unless they take great care to ensure otherwise. Although genetic methods may change as our knowledge of the specific genes that cause inherited diseases advances, the social effects may remain.

The second half of the book takes the concerns raised by the historical review and discusses different possible attitudes to the new genetic knowledge. These fears are too many to mention in detail. I share some of them, but not all. I should declare that, as a scientist, I belong to that professional group whom the authors characterise as imposing their views and ideas on the wider community: I am a biologist doing research at the interface between embryology and genetics who has shares in a biotechnology company.

Like the authors, I am concerned about the psychological effect on a mother (and a father?) of having an abortion to eliminate a foetus carrying a diseased form of a gene, but I would not wish to deny others that choice. I also agree that there should be greater privacy in the use of a person's genetic information, and I endorse changes made to give people equal opportunities. In this area, I imagine that the differences of opinion relate to exactly where we should draw the line. Which impairments are sufficiently severe to justify a wish that they must not occur?

By contrast, unlike the authors, it has always seemed to me that while we should offer people who have impairments as much help and opportunity as we can, our obligation is not the same towards the children of the future. I consider it acceptable for prospective parents who are carriers of a genetic impairment to decide to screen early embryos to select only those not carrying the disease form of the gene. And if it were possible in the future, I would have no ethical objection to molecular techniques being used to change the disease form of a gene in embryos to achieve the same end. Indeed, I argue that it would be immoral not to do so.

This is a thought-provoking book laden with information and detailed historical records. I did not find it easy to read, partly because it contains so much material. It makes a very powerful point about the need to extend welcoming arms to all children. But in our concern to minimise the misuse of genetic knowledge by governments or companies, I hope we do not lose the exciting - and ethical - opportunities created by that knowledge.

Ian Wilmut is head of the department of gene expression and development, Roslin Institute, Midlothian.

Genetic Politics: From Eugenics to Genome

Author - Anne Kerr and Tom Shakespeare
ISBN - 1 873797 26 5 and 25 7
Publisher - New Clarion Press
Price - £25.00 and £12.95
Pages - 211

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