Peter Mills explains how citizens’ deliberations will inform ministerial advice

The National DNA Database (NDNAD) has been growing significantly in recent years. It is now, in proportion to the population, by far the largest forensic database in the world (over 1 in 20 UK citizens are on it). Developments in genetic science, research capabilities and innovative techniques (such as familial searching) offer new opportunities to put the information to use. 

Issues of public concern

The government’s advisory body on developments in human genetics and their impacts on individual lives is the Human Genetics Commission (HGC). In its view, the expansion of the NDNAD raises significant issues of public concern that have not so far been subjected to sufficient debate, either in Parliament or amongst the public. 

While most people accept that there needs to be a balance between protecting the public from the effects of crime and the infringement of privacy involved in taking and keeping genetic information about individual citizens, where that balance should be struck is often keenly disputed. And, while there has been no overwhelming groundswell of opposition to the growth of the NDNAD, the assumption that lack of opposition implies general public approval needs to be examined properly.

Citizens’ inquiry

Earlier this year the HGC commissioned a Citizens’ Inquiry into the NDNAD with partners(1). From the outset, the commissioning group agreed that the shape of the project should be determined to a large extent by the participants: by their information needs, by the nature of their concerns, and by their preferred ways of engaging with the issues and with each other.

For six weeks, two panels in Glasgow and Birmingham, linked by video and facilitated by independent public dialogue experts Vis-à-vis RC Ltd, heard from a range of experts including representatives of interest groups, the police, database governance bodies, forensic scientists and journalists. The weekly sessions were followed by regional visits to the Scottish Parliament (to question MSPs from the main political parties) and to a community centre in the London Borough of Hackney (to hear from people with first¬hand experience of having the police take biological samples).  
 
In March, the two panels came together over two weekends to discuss their experiences of the process and to bring together their conclusions. In May, the panellists travelled to London to meet the Human Genetics Commission, to discuss their findings.

Unanimous and contested conclusions

The Inquiry report, launched simultaneously in Glasgow and London in July, provides insight into the perspectives, anxieties, and areas of knowledge and lack of knowledge that a diverse group of citizens brings to issues relating to the NDNAD. It also highlights the concepts and language through which they articulate and debate them. It gives a strong indication of the directions in which the citizens feel that action needs to be taken.

The panel concluded unanimously that there is a need for a nationwide public awareness campaign about the NDNAD that will reach all sections of the population. It wanted information about the police powers to take a DNA sample to be given to people from whom DNA samples are taken. It recommended the establishment of an independent body with broad membership, constituted by statute specifically to oversee the NDNAD. It called for independent guidance to be provided to juries in trials that involve DNA evidence before they hear from expert witnesses. It also recognised a need for education at school level to include learning about DNA and its potential uses. Finally, it recommended that, where DNA is taken from children, a full explanation should be given in age-appropriate terms. 

On other issues, such as the desirability of a universal DNA database, taking DNA samples at birth, international data sharing, retention periods for DNA profiles and recording ethnic background, the panel’s opinions remained divided.

Input into advice

The HGC focussed on issues highlighted by the Inquiry when it sought broader input on the forensic use of genetic information through a national consultation (which closed in November). Responses to the consultation, along with the Inquiry’s conclusions and other evidence, will inform the HGC’s final report to ministers, due in 2009. 

Information about the Inquiry, the citizens’ findings and the HGC’s consultation can be found on the HGC website. 

Reference

1. The Economic and Social Research Council Genomics Policy and Research Forum in Edinburgh, and the Policy, Ethics and Life Sciences (PEALS) Research Centre in Newcastle.  The project was supported with funding from the Department for Innovation, Universities and Skills Sciencewise programme and the Wellcome Trust.

Dr Peter Mills is Secretary to the Human Genetics Commission