UK Government responds to Human Genetics Commission's report on genetic information 27/6/03. By the Public Health Genetics Unit The Government broadly welcomes the Human Genetics Commission's report on genetic information, and points out that several recommendations have already been acted upon.

Simultaneously with the release of its white paper detailing strategic investment in genetics in the NHS, the UK Government has responded to a report on genetic information by its main advisory group on genetics, the Human Genetics Commission (HGC).

The HGC report, 'Inside Information: Balancing interests in the use of personal genetic data', published in May 2002, discussed both medical and non-medical uses of genetic information, including applications in medical research, parentage testing and family relationships, insurance and employment.

Feature: Inside Information

The Government's response broadly welcomes the HGC report and points out that several of its recommendations have already been acted upon, for example its suggestion that an independent group should be appointed to provide ethical oversight to the UK Biobank project, and that the period of the moratorium on the use of genetic test results in insurance should be used for research on this issue.

Work is also underway on improving the handling of patient data confidentiality in the NHS in general, and on a new edition of the Department of Health's Research Governance Framework for Health and Social Care, which sets out standards for all health-related research (a draft was issued in April 2003).

The Government accepts the HGC's recommendation that non-consensual genetic testing should become a criminal offence, and has also included this commitment in its White Paper. However, it appears less persuaded by some of the HGC's recommendations on the forensic use of DNA. It does not propose, for example, to prohibit access to Biobank samples by police and considers that sufficient sanctions are in place to prevent improper use.

The HGC also recommended that there should be independent oversight of the large and rapidly growing National DNA Database, currently the responsibility of the Forensic Science Service, the Home Office and the Association of Chief Policy Officers. The Government comments that this recommendation has been taken into account in a review of arrangements for the Database but does not say what conclusion the review, due to be published later this summer, has reached. The Government does accept that the new arrangements allowing samples provided voluntarily for elimination purposes during a criminal investigation to be retained in the database should be underpinned by two separate consent processes: one for the initial taking of the sample, and another allowing its permanent retention.

On the issue of parentage and family relationship testing, the Government notes the HGC's concerns about the sensitive and intrusive nature of such tests when used by the Child Support Agency or immigration services, but appears satisfied with the guidelines that are currently in place. More detailed comments on private paternity testing services may emerge when the Government responds to the HGC's recent report on the supply of genetic testing services directly to the public.

Article courtesy of the Public Health Genetics Unit .