NHS to get injection of genetics knowledge

May 16, 2003

Alan Milburn, secretary of state for health, is to publish a white paper on genetics that is intended to push knowledge of the subject deep into the National Health Service and the rest of government.

The white paper, which follows the completion of the Human Genome Project and the celebrations of the 50th anniversary of the discovery of the structure of DNA, will be published before the summer.

It is likely to put more money into the treatment of genetic diseases and will involve an increased number of genetics professionals being employed in the NHS to reduce waiting times for genetic-disease sufferers. It will also lay the groundwork for more NHS genetics research.

The white paper is expected to address public concern about the social implications of new genetics knowledge. One of the bodies that will be most affected by the white paper is the Human Genetics Commission, set up three years ago to advise the government on advances in genetics. It is chaired by Baroness Helena Kennedy, chancellor of Oxford Brookes University.

The HGC is planning research on genetics and reproduction that is likely to influence the way the white paper is implemented, especially on the public acceptability of genetic approaches to health. Some initial work has been commissioned from philosophy academics Heather Draper, of the University of Birmingham, and Tom Sorrell, of the University of Essex.

John Harris, an HGC member and professor of bioethics at the University of Manchester, said that the white paper marked an opportunity for the UK to gain a march on other European Union countries, including France and Germany. There, governments have reacted to public pressure by limiting genetics research, especially with stem cells, because of their relationship to the human embryo.

Speaking at last week's meeting of the HGC in Birmingham, Professor Harris said: "Other countries are still doing research on old stem-cell lines, which are becoming less useful. This is hypocritical on their part and makes the UK more attractive for researchers."

He added: "The work we are doing is meant to set out the principles for the way in which genetic information is used. For example, we have set our face against any discriminatory use of genetic information in insurance."

Professor Harris expected the commission to do work on "reproductive liberty", the issues surrounding how individuals and couples should be able to use reproductive technology to choose the sex or other characteristics of their children.

He said the HGC was split on the issue. "Allowing people to choose the sex of their children in India might have a completely different effect from letting them do the same in Britain," he said.

The HGC plans to complete the work on genetics and reproduction in about a year and will hold public consultations on the issues. The HGC will also work on the implications of the UK's ageing population, since genetic knowledge of diseases and the health of old people is of growing importance. It will also look at genetic databases.

There is likely to be a United Nations universal declaration on the use of genetic data, analogous to the existing ones on human rights and on the human genome.

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