Select Committee on Home Affairs Written Evidence


Memorandum submitted by the Human Genetics Commission

  I would like to begin by saying that Members of the Human Genetics Commission (HGC) are grateful for the opportunity to contribute to this Home Affairs Committee Inquiry. As Chair of the HGC's Identity Testing Monitoring Group, I have been asked to submit a response on behalf of my fellow Commissioners.

  The HGC is the Government's advisory body on new developments in human genetics and how they impact on individual lives, with a particular focus on the social, ethical and legal issues. The Commission is chaired by Baroness Helena Kennedy QC and is made up of twenty-three members including experts in genetics, ethics, law and consumer affairs. We also have a Consultative Panel of people who have direct experience of living with genetic disorders and who act as a sounding board for our reports and recommendations.

  It is clear from the press notice relating to the Inquiry that it will examine broad issues relating to modern security and surveillance techniques and their wide implications for British citizens. The Commission has an interest in the storage of human genetic information and has monitored the use of genetic databases for research, medical and forensic purposes since its inception in 1999. Our interest within the context of this Inquiry is two-fold. Firstly, we have concerns about safeguards relating to research and genetic databases. Our understanding of genes and of how they work in the human body is the result of prolonged and extensive research efforts. If this understanding is to be translated into therapeutic benefit, such research must be given every encouragement. Sustained public confidence and participation is therefore vital.

  Secondly, in terms of the forensic use of genetic information, the HGC has been closely involved in overseeing the operation and management of the National DNA Database. In May 2002, the Commission published its report Inside Information—Balancing interests in the use of personal genetic data, which contained several recommendations calling for robust ethical oversight of the work of the National DNA Database custodian and the Database profile suppliers. Further, it recommended that the Home Office and Forensic Science Service introduce an independent research ethics committee, to approve such research proposals which involved the use of database samples—a recommendation which is currently being implemented by the Home Office.

  Following publication of Inside Information, the National DNA Database Strategy Board invited the HGC to put one member forward to sit on the Board and this arrangement has continued to this day. I myself took over as HGC representative on the Board, when I joined the HGC in 2001. In late 2006, following continued lobbying by the HGC for additional ethical oversight of the database, the Chair of the National DNA Database Strategy Board wrote to Baroness Kennedy QC, to ask that a second member join me on the Board. This arrangement—two HGC Members sitting as lay-members on the Board—was formalised, so that it will continue even if the HGC ceases to exist or its remit changes in the future.

  Due to the time and drafting constraints attached to this submission, it will not be possible to fully explore the issues as we see them in any detail. For this reason, I enclose a copy of the Inside Information report together with the Executive Summary for your interest.[196] The Commission has discussed and commented on the use of personal genetic information many times but, in my view, this report addresses the key issues and areas of concern in a clear and comprehensive way. In particular, I would like to draw the Committee's attention to Chapters 5 and 9, which look at medical research and personal genetic information and forensic uses of genetic information.

  Our overriding concern in respect of the growth of private and public genetic databases is the risk that they pose to research and to medical care if they are accessed for purposes that fall outside the original remit for which the information has been collected. One of our key roles is to promote debate and listen to the public on matters relating to human genetics. Earlier this month, the Commission held a public meeting in Edinburgh with the ESRC Genomics Policy and Research Forum to discuss the Scottish genetics research database, Generation Scotland. It was evident from audience questions and comments that there was real anxiety around the possibility—however unlikely—that the police might gain access to genetic collections such as UK Biobank and Generation Scotland. We all have an interest in successful genetics-based medical or health-related research and our concern is that public anxiety in this area could affect people's willingness to collaborate with the NHS or in research to the long-term detriment of us all.

  As a Commission, we recognise the National DNA Database as a powerful criminal intelligence tool. However, there is a danger that its value in terms of crime detection and reduction could be used to justify the erosion of important freedoms, without prior analysis of the risks and benefits as to the likely good that may accrue from breaching privacy in the short term against the loss to society in the long term, as a result of citizens withdrawing their cooperation.

  It might interest you to learn that the Commission, in partnership with the ESRC Genomics Forum, and PEALS and with the support of the Sciencewise programme and the Wellcome Trust, intends to commission a Citizens' Inquiry on the forensic use of genetic information. This deliberative event will involve a small, inclusive group of UK citizens who will be able to call witnesses, review, assess and discuss evidence and address key questions and concerns about the forensic use of DNA, specifically the National DNA Database. The group will consider social, legal, ethical, economic and scientific factors and will be able to express their views on a number of key questions, some of which will be posed to the group and others defined by the citizens themselves. Findings and recommendations made by the group will be published and submitted to Ministers. The Commission also intends to respond to the on-going Government consultation, to look at the potential to review the Police and Criminal Evidence Act.

  We would be happy to provide you with further information concerning the HGC should you need it and would very much appreciate being kept up to date on the progress of your work in this area.

April 2007

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