Select Committee on Science and Technology Written Evidence

Memorandum by Dr Paul G Debenham, Head of Life Sciences and Forensics, Laboratory of the Government Chemist (LGC) and Managing Director, University Diagnostics Ltd (UDL)

1.  Current projects involving collecting genetic information on people in the UK

We are not actively involved in the collection of individuals' genetic information in our own capacity or for our own use. However, as a matter of process within the provision of our genetic analytical services our confidential records/files do contain genetic profiles from the UK population. The DNA tests involved are for minisatellite or microsatellite loci. These DNA tests are not considered to have any association with medical or behavioural traits and act solely as an inherited "bar-code" for the DNA. Three particular areas of our genetic analysis services are relevant:

    —  The National DNA Database. LGC presently acts as a Database processing laboratory for 13 Constabularies in the UK. In this role we receive mouth swabs (two per person) taken under PACE regulations. These are known as CJ (Criminal Justice) samples. All our activities in the subsequent processing of the sample and its paperwork are in accordance with the Forensic Science Service document GP502. The sample is accompanied by a simple sample identification form, DNA1, detailing the name of the provider and some demographics. We convert part of one mouth swab into a DNA extract that is then analysed to reveal its genetic profile at 10 microsatellite loci and a sex identification test. The results are sent by couriered disc to the Forensic Science Service Laboratory in Birmingham which is the repository of the National DNA Database. This Birmingham laboratory does all the "databasing". LGC retains copies of the profiles, DNA 1 forms and remnant swabs and DNA samples for six years according to GP502. On notification of an individual's acquittal LGC is required to promptly destroy the DNA 1 form record, all samples and extracts held and delete the record from our Laboratory Management Information System;

    —  DNA Profiles associated with the Immigration Casework of the Joint Entry Clearance Unit of the Home Office. UDL provides DNA profiling services for the FCO to resolve the veracity of claimed relationships between foreign families and UK residents. The individual details are retained in confidential paper work files that also contain details of the profile results obtained. The FCO require the retention of these files for six years. The profiles obtained are normally six minisatellite loci, but additional microsatellite tests may be required to resolve complex relationship questions. DNA extracted from the blood samples provided is destroyed after three months and the actual blood samples are destroyed after one year. Genetic data derived from the samples in the laboratory is retained in analytical computers, but is only stored by reference to sample numbers;

    —  DNA Profiles associated with the Paternity Casework of the Child Support Agency. UDL provides DNA Profiling services for the Child Support Agency to resolve the issue of disputed paternity associated with child support since May 2000. The individual details are presently held on paper files, but computer processing of casework details will commence shortly. The individual details will be retained for one year after reporting results and blood and DNA samples are destroyed after three months. The blood samples are just simple pinprick samples collected as dried bloodstains. The DNA tests used are normally 14 microsatellite tests and a sex identification test. These DNA results are not stored in a computerised form with direct association with the casework files.

2.  Why are these genetic Databases being assembled?

  The National DNA Database is being assembled by the Association of Chief Police Officers for the purposes of crime investigation intelligence. Our role is purely as a production conduit for the database facility held by the Forensic Science Service at Birmingham. Our work is paid for by the Constabularies which send the samples to us.

3.  What is the genetic information that is being collected?

  We do not collect genetic data for databases apart from as anonymous data for reference tables of the frequency of genetic types. The genetic information that we obtain from the DNA samples is about the structure of specific minisatellite and microsatellite sequences in human DNA. These parts of our DNA contain simple genetic code motifs that can be highly repeated. The data analysed is a simple numerical derivation of the number of repeating motifs found within an individual's DNA. In combination these can create a unique bar-code for an individual's DNA, but they provide no identification of the characteristics of the individual.

4.  How do we see our responsibility to privacy, consent, future use, public accountability and intellectual property rights?

  We observe strict confidentiality with respect to any aspect of our casework services included DNA results. We only disclose technical data-sheets for our paternity and immigration casework following the written request of the parties involved. National DNA Database profile data would only be disclosed to the submitting Constabulary, or the Forensic Science Service upon written request. The parties we work for establish the consent for the taking of the samples involved. The genetic identity tests we perform have no alternative use potential and no IP has been considered.

  Our staff are all employed under strict confidentiality agreements and relevant sections of the Official Secrets Act where appropriate.

5.  How do you see advances in genetic databasing developing in the future?

  The new class of "pharmacy" genetic tests known as pharmacogenetics could be most effective if a mechanism was available to make an individual's data accessible at any surgery, pharmacy and hospital across the country. Pharmacogenetics is the study and definition of genetic loci that directly influence the efficacy of prescription medications. There is growing evidence that a substantial reduction in adverse reactions, and improvement in treatment, could be achieved through the customisation of medications to match the genetic make-up of the individual. Several relevant gene diagnostics are already technologically available. However the diagnostic results may be most useful to the individual if his/her pharmacogenetic profile were to be accessible to doctors, pharmacists, paramedics etc. Thus a national database of pharmacogenetic data may well be a very sensible development.

  Whilst the technological developments in DNA diagnostics herald the capability to test for many more genetic tests at one time, it is to be hoped that genetic tests will only be performed for the diagnosis required. This will minimise the concern that unrequired gene test data is collected alongside that actually requested with the possibility that it is stored and perhaps accessed at a later date by others without the knowledge and permission of the donor involved.

  The advent of internet-advertised genetic testing services may result in UK individuals' DNA data being managed by companies outside of the UK. Such activities would be outside of any UK regulatory framework.

6.  What lessons should be learnt from genetic database initiatives in other countries?

  I am only aware of police databases of varying equivalence to the UK's national DNA Database. I understand that by comparison of these it can be established that the broader the categories of crime requiring genetic databasing the more effective the database becomes for future crime intelligence.

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