Genetic screen finds hidden disease

November 11, 1994

A new definition of health should be adopted by medical experts if they are to deal successfully with the ethics of genetic screening, a Manchester conference was told last week.

If health is defined as "absence of disease" many people will gather tags of "unhealthiness" as they accumulate information about their genes, the conference, "Ethics of Genetic Screening", was told.

Instead, a new definition should be more positive, centred on a person's ability to achieve what they want to in life given the circumstances they find themselves in, said Ingmar Porn, professor of Philosophy at Helsinki University.

Professor Porn was speaking at a meeting of academics involved in Euroscreen, a project to monitor the development of genetic screening across Europe and make recommendations on ethical issues. The project is co-ordinated by Ruth Chadwick, professor of moral philosophy at the University of Central Lancashire.

Professor Porn said: "The strongly negative conception of absence of disease is too widely held by medical experts.

"By using statistical methods it is said that you can determine a normal range of genetic variation and anyone who falls outside that is diseased. But no one has proved to my satisfaction that a normal range can in fact be discovered -- there is nothing but variation. People get defined as carriers of genetic diseases when in fact they are quite normal."

Professor Porn said that the more positive concept of "adaptedness" means that if a person discovers they carry a gene for a disease, they would not consider themselves to be unhealthy if they "still have an adequate repertoire to carry out their plans". I am confident that this concept will spread," he said.

The difficulties of measuring the success of a genetic screening programme were also described. If a decrease in the incidence of a disorder was measured then parents who knowingly had an abnormal child would count as failures, said Darren Shickle of the University of Wales.

The meeting also heard about testing children for major genetic diseases, historical precedents in screening, and the approaches of different European countries to tackling the ethical issues. The project runs for two more years.

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