Press release, 2 April 2001

HUMAN GENETICS COMMISSION DISCUSSES CONCERNS OVER POLICE FORENSIC DNA DATABASE PROPOSALS

The Criminal Justice and Police Bill currently before Parliament involves proposed changes to the way in which DNA samples and the data obtained from them may kept on the forensic database. At present, if a person is acquitted of an offence or ceases to be suspected of it, any DNA samples obtained from him or her must be destroyed. Under the proposed changes, these may be retained indefinitely.

The Human Genetics Commission has been considering this issue as part of its deliberations following its public consultation on the wider issues of protection, storage and use of genetic information ('Whose hands on your genes?'). It is currently analysing the responses it has received from the public and intends to issue advice to ministers later this year.

The HGC discussed the issue at its last meeting (2 March), the minutes of which are now available on its website. Whilst recognising that genetic data can and should be used in combating crime, members highlighted a number of concerns about the proposals, which they have recently raised with Ministers.

The issues Members discussed included:

Whether people who have committed no crime should be obliged to have details of their DNA lodged on a register, or whether they should be able to request the removal of information if they so wish.

The possibility of forensic DNA sample analysis moving beyond identification to, for example, testing for disorders that might be related to criminal behaviour, and whether it could be used to predict characteristics such as race or hair colour.

Whether samples given voluntarily to aid elimination should be destroyed at the end of the investigation.

Whether an independent body should be set up to oversee either the whole database or just the samples of those who had been suspected but were later cleared or acquitted.

In addition the HGC welcomes the proposal from the House of Lords Select Committee on Science & Technology report on 29 March, 'Human Genetic Databases: Challenges and Opportunities', that "the Government should establish an independent body, including lay membership, to oversee the workings of the National DNA database, to put beyond doubt that individuals' data are being properly used and protected."

Also discussed on 2 March was preimplantation genetic diagnosis, the use of genetic test results by insurance companies, and other matters relevant to the HGC's review of personal genetic information.

NOTES FOR EDITORS

1. In November 2000 HGC published a discussion document 'Whose hands on your genes' as part of its review on the storage, protection and use of genetic information. The consultation period ended on 23 March 2001. Copies are available from contact details above.

2. The Human Genetics Commission's terms of reference are:

To analyse current and potential developments in human genetics and advise Ministers
on:

their likely impact on human health and health care

their social, ethical, legal and economic implications

To advise on strategic priorities in the delivery of genetic services by the NHS.

To advise on strategic priorities for research.

To develop and implement a strategy to involve and consult the public and other stakeholders and encourage debate on the development and use of human genetic technologies and advise on ways of increasing public knowledge and understanding.

To co-ordinate and exchange information with relevant bodies in order to: identify and advise on the effectiveness of existing guidance and of the regulatory and advisory framework as a whole, taking account of European and global dimensions

look at the lessons learnt from individual cases requiring regulatory decision to build up a wider picture

To consider specific issues related to human genetics and related technologies as requested by Ministers.

To operate in accordance with best practice for public bodies with regard to openness, transparency, accessibility, timeliness and exchange of information.

A key role of the HGC is to promote debate, to listen and gather public and other stakeholders' views, to consider these thoroughly and to provide its expert advice.

3. The HGC reports to Health and Science Ministers.

4. The HGC was established following the Government's Review of the Advisory and Regulatory Framework for Biotechnology in May 1999 and incorporates the former roles of the Advisory Committee on Genetic Testing, the Advisory Group on Scientific Advances in Genetics and the Human Genetics Advisory Commission.



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