APPENDIX 30
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
196 Not printed. Back
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