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New Human Genetics Commission Announces 2000/2001 Workplan
June 29, 2000Following the major announcement this week of the decoding of the Human Genome, the Human Genetics Commission, the new Government body set up to provide strategic advice on human genetic technologies, has today announced its workplan. This will principally involve looking at the many issues surrounding the storage, protection and use of genetic information.
The HGC was set up to advise Ministers on potential developments in human genetics and their impact on human health and healthcare, with a particular focus on the social and ethical issues. It has also decided that, in addition to its regular consultative meetings, from 2001 all full meetings will be open to the public to attend as observers. The HGC feels that this is essential to open and transparent debate.
The Human Genome Project and other exciting developments in genetics mean that personal genetic information is likely to become much more widely available in the next decade, and there will inevitably be a growing demand from commercial and other bodies to gain access to it for a wide range of purposes. These could include potential uses for clinical, forensic or research purposes, or use in insurance and employment. But it is important that wider ethical issues surrounding privacy, confidentiality and discrimination are examined at the same time.
The HGC has set up a working group to establish a set of principles relating to the storage, protection and use of genetic information. The group will review the current situation, will aim to consult and encourage debate on the issues, and will issue final recommendations to Ministers by autumn 2001. As part of this work, and at the request of Ministers and the Genetics and Insurance Committee (GAIC), the HGC will consider the social, ethical and legal implications of the use of genetic tests in insurance.
It will also take into account proposals by the Medical Research Council and Wellcome Trust to set up a database of around 500,000 tissue samples from volunteers for research purposes. Although the MRC and Wellcome Trust have sought public views on how this project should be carried out, the HGC feels that there is a need for further public consultation on the basic principle of setting up such databases.
Other areas
In addition, the HGC will carefully monitor developments in NHS genetic services, genetic testing, patenting and reproductive choice issues.
The Chair of the Human Genetics Commission, Baroness Helena Kennedy QC, today said:
"We have heard this week that the 'Book of Life' may now be open to inspection, but what we do with the information it contains is a matter which society as a whole, and not just the scientists, must decide. Developments in the storage and use of genetic information raise particular questions and concerns, and require careful analysis and discussion. We will be exploring the whole area thoroughly, whilst ensuring that people are both fully informed of our deliberations and also have a regular chance to contribute."
For a full copy of the HGC workplan and full minutes of the 18 May meeting, please go to the website at www.hgc.gov.uk
ENDS
Human Genetics Commission
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