Genetics commission consults UK populationBMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7238.823/a (Published 25 March 2000) Cite this as: BMJ 2000;320:823
Legal protection for the storage and use of genetic information and the implementation of genetic testing have been suggested as key areas for the UK Human Genetics Commission to review as part of its initial work, in a consultation document published this week.
The Human Genetics Commission was set up recently to provide strategic advice to the government on developments in human genetics and to review the implications of these. The consultation document is designed to gather comments from as wide a group of the population as possible in order to identify the commission's priorities for the next two to three years.
The commission suggested that the following issues might be possible priorities:
Storage and use of genetic information. There are proposals to establish large scale collections of human DNA and biological samples to be linked to medical information for research. Is genetic information any different from any other personal information, and how adequate are current legal safeguards to protect the privacy of individuals' genetic information?
Developments in genetic testing—how much information should patients and other members of their families be given about the results of genetic tests?
Consequences of genetic reproductive choices—what are the issues around genetic testing of fetuses during pregnancy?
Provision of genetic services—what are the implications of new developments in human genetics for healthcare services?
Gene patenting. A European directive on gene patenting comes into force later this year. Is this appropriate?
Helena Kennedy QC, chairwoman of the Human Genetics Commission, said: “A key aim of the commission is to act as a bridge between the public and the government on genetics issues.”
The commission hopes to gain responses to its proposed list of priority areas from interested groups and members of the public before starting work on them. The consultation document forms a key part of the discussion, with a public consultative meeting to be held in London on 10 April.
The consultation document can be found on the Human Genetics Commission website at www.hgc.gov.uk/business_consultations1.htm. Tickets for the consultative meeting are available from the commission's secretariat (tel 020 7972 4017).