Go-ahead for human genetics scrutiny

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The Independent Online
In a remarkable policy U-turn, the Government yesterday announced that it is to set up a Human Genetics Advisory Commission to oversee the new science, including the use of genetic tests in insurance, employment and public health.

Representatives of families affected by genetic disease welcomed the establishment of the commission, which will report to both the Secretary of State for Health and the Office of Science and Technology.

John Gillott, for the Genetic Interest Group (GIG), said that the commission "would be very much welcomed by us". All those affected by genetic disorders hope that the new science will bring either better treatment or cures in its wake, but Mr Gillott said that GIG was also concerned about the possibility of abuse of personal genetic information. "If this commission can flag up these issues, it will be a step in the right direction," he said.

Over the past decade researchers have dissected the double helix strands of human DNA and teased out genes which, when defective, result in diseases such as cystic fibrosis, Huntington's Chorea, muscular dystrophy, and a small proportion of breast cancers and some cases of cardiovascular disease. But there have been incidents, particularly in the US, of discrimination against healthy people on the basis of what might be carried in their genes.

Nearly two and a half years ago, the Nuffield Council on Bioethics called for Government action to avoid abuse and to ensure that the positive benefits flowed from the research.

David Shapiro, secretary to the Bioethics Council, said that the commission, "marks significant progress. We are beginning to have the oversight of human genetics that is required."

The establishment of the commission represents a rare backbench victory. The Select Committee on Science and Technology had called on the Government to set up a commission last July. But the Government rejected any moves other than a committee on genetic testing.