LONDON - The Human Genetics Commission (HGC), set up by the UK government to advise it on human genetic technologies, has announced its initial work plan and said from next year all its meetings will be open to the public, a move it feels is essential to open and transparent debate.

Its first task will be to establish a set of principles relating to the storage, protection and use of genetic information. This will include consideration of the social, ethical and legal implications of the use of genetic tests in insurance. It expects to submit its recommendations to the government by September 2001.

The HGC also will be studying proposals by the government research body, the Medical Research Council (MRC), and the Wellcome Trust charity to set up a database of 500,000 tissue samples from volunteers for genetic research. The two have committed #25 million (US$37.8 million) to establish the collection, which would be open to academic and commercial users. Such a large-scale DNA collection will make it possible to identify the inherited components of diseases that also are strongly influenced by environmental factors.

The HGC said although the MRC and Wellcome Trust have sought public views on how this project should be carried out, there needs to be further public consultation on the basic principle of setting up such databases. "In particular, we will be looking at how the consent of participants in such research should be obtained and will be examining the important issue of feedback to participants," said Sandy McCall Smith, vice chair of the HGC.

"It will be important for the public to be reassured that its involvement will be based on proper consent and that nobody is going to be subjected to involuntary DNA analysis."

The HGC also will examine if access to existing databases for DNA research should be allowed. "Is it ethical to look at these samples without the consent of the donor, who may have donated with no idea it could be subject to DNA analysis?" asked McCall Smith.

The chair of the HGC, Helena Kennedy, said the Human Genome is now open to inspection. "What we do with the information it contains is a matter which society as a whole, and not just scientists, must decide. Developments in the storage and use of genetic information raises particular questions and concerns, and require careful analysis and discussion."

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