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  • 1. Freedom of HGC08/P20 Information Status FULLY OPEN HUMAN GENETICS COMMISSION MATTERS ARISING FROM THE 33rd HGC PLENARY MEETING OF 24TH SEPTEMBER 2008 Paper HGC 08/P20 Purpose 1. This paper informs the Committee of matters arising from the business of the previous HGC plenary meeting and progress against actions agreed at previous meetings, which are recorded in the table at Annex A to this paper. Commissioners are invited: • to note and discuss matters arising from the previous meeting • to review the table of actions arising, note progress against objectives and consider whether they wish to recommend that particular issues are addressed as a matter of priority DH Good Practice Guide on Paternity Testing (paragraph 3.2) 2. The Guide is currently being re-written to improve the practical ‘useability’ of the text. Copies will be provided for Commissioners when the Guide is published. Secretariat to draft a response to the HTA Consultation on its revised Codes of Practice (paragraph 4.5) 3. The letter from Professor John Sulston acknowledging the HTA consultation on its revised Codes of Practice is attached at Annex B. The letter notes that the HGC does not have any specific comments on the codes at this stage. Secretariat to draft a response to the NHS Constitution consultation (paragraphs 4.6 and 4.7) 4. A response to the NHS Constitution consultation has not been sent. It was not possible to complete this in the required time frame due to other priorities. Secretariat to circulate the note of the joint meeting held between the Human Genetics Commission and the Nuffield Council of Bioethics when available (paragraphs 4.8 and 4.9) 5. A joint meeting was held recently between the Human Genetics Commission and the Nuffield Council of Bioethics. The minutes of this meeting have not HGC08/P20 – PAGE 1 OF 13
  • 2. HGC08/P20 been received from the NCOB yet. They will be circulated to the Commission once received. Secretariat to inform stakeholders of the plan to develop a common framework of principles for direct genetic testing and to organise a working group for this purpose (paragraphs 6.1 to 6.12) 6. An email was sent to all participants of the Direct Genetic Testing seminar on the 30 June 2008 plus other interested stakeholders, which contained a link to a statement on the HGC website announcing that the HGC will lead with the production of a ‘Common Framework of Principles for Direct Genetic Tests’. A group of individuals have been identified and invited to be on the working group to develop the Principles. A list of the working group members can be found in the Genetic Services section of the Standing Items paper (HGC08/P26). Secretariat to revise the draft statement on genetic ancestry testing and circulate to Commissioners prior to publication on the HGC website (paragraphs 7.1 to 7.11) 7. The revised statement on genetic ancestry testing was circulated to Commissioners and was agreed. The statement has been published on the HGC website and can be found in Annex D of the Standing Items paper (HGC08/P26). Secretariat to draft letter to Ministers in sponsor departments setting out proposals for future HGC work (paragraphs 8.1 to 8.10) 8. This action is still pending. Secretariat to draft and circulate response to Connecting for Health consultation, taking into account any views gathered from members of the Consultative Panel (paragraph 9.1) 9. A draft response of the Connecting for Health consultation has been produced by the Secretariat. This item is discussed in more details in the plenary paper HGC08 P22. Secretariat to respond positively to the letter from Professor Fryer in relation to genetic testing of children (paragraph 9.2) 10. A letter was sent to Professor Alan Fryer informing the Clinical Genetics Society that the HGC will be pleased to assist with a programme of work in the area of genetic testing of children. This letter can be found in Annex C. A further letter was received from Professor Alan Fryer inviting a HGC Commissioner to attend a one-day workshop on the genetic testing of children. This letter can be found in Annex D. The Fraser report and the Scottish Government’s response (paragraph 9.4) HGC08/P20 – PAGE 2 OF 13
  • 3. HGC08/P20 11. Subsequent to the Fraser report the Scottish Government published a consultation on the retention of DNA and fingerprint data in Scotland. The HGC response to this consultation can found in Annex E. Conclusion 12. Commissioners are invited: • to note and discuss matters arising from the previous meeting • to review the table of actions arising, note progress against objectives and consider whether they wish to recommend that particular issues are addressed as a matter of priority HGC Secretariat December 2008 Annexes Annex A – Table of actions arising from previous HGC meetings Annex B – HGC response to HTA consultation on their revised codes of practice Annex C – Letter from Dr Peter Mills to Professor Alan Fryer regarding Genetic Testing of Children Annex D – Letter from Professor Alan Fryer to Dr Peter Mills Annex E – HGC response to the Scottish Government consultation on the retention of DNA and fingerprint data in Scotland HGC08/P20 – PAGE 3 OF 13
  • 4. HGC08/P20 – ANNEX B Table of outstanding actions arising from previous HGC plenary meetings Arising1 Action and sub tasks Lead Current Target date Icon2 (member) status 1  HGC/24.09.08/4.5 Secretariat to draft a response to the HTA Consultation on its Emma Burton Complete 14.11.08 revised Codes of Practice  HGC/24.09.08/4.7 Emma Burton Unable to 17.10.08 2 Secretariat to draft a response to the NHS Constitution consultation complete in time for deadline  HGC/24.09.08/4.10 Pete Mills Minutes not 3 Secretariat to circulate the note of the joint meeting held between the Human Genetics Commission and the Nuffield yet received Council of Bioethics when available from NCOB  HGC/24.09.08/6.12 Emma Burton Complete 10.12.08 4 Secretariat to inform stakeholders of the plan to develop a common framework of principles for direct genetic testing and to (project organise a working group for this purpose ongoing  HGC/24.09.08/7.11 Cathleen Complete 10.12.08 5 Secretariat to revise the draft statement on genetic ancestry testing and circulate to Commissioners prior to publication on the Schulte HGC website 1 Committee/ meeting date/minute reference (HGC = Plenary, BC = Business Committee, GSMG = Genetic Services Monitoring Group, etc.) 2 A tick in this column indicates completion. ‘Emoticons’ indicate whether, in the assessment of the Secretariat, actions in progress are on target (), at risk and requiring action (), or critical/ significant threat requiring urgent remedial action (). HGC08/P20 – PAGE 4 OF 13
  • 5. HGC08/P20 – ANNEX B Arising Action and sub tasks Lead Current Target date Icon (member) status  HGC/24.09.08/8.10 Pete Mills Ongoing 10.12.08 6 Secretariat to draft letter to Ministers in sponsor departments setting out proposals for future HGC work  HGC/24.09.08/9.1 Cathleen Draft included 10.12.08 7 Secretariat to draft and circulate response to Connecting for Health consultation, taking into account any views gathered from Schulte with members of the Consultative Panel December plenary papers  HGC/24.09.08/9.2 Cathleen Complete 10.12.08 8 Secretariat to respond positively to the letter from Professor Fryer in relation to genetic testing of children Schulte HGC08/P20 – PAGE 5 OF 13
  • 6. HGC08/P20 – ANNEX B Rosanna Bate Policy Officer Human Tissue Authority Finlaison House 15-17 Furnival Street London EC4A 1AB 12 November 2008 By email: rosanna.bate@hta.gov.uk Dear Rosanna Bate Re Human Tissue Authority - codes of practice consultation The Human Genetics Commission (HGC) is the UK Government’s advisory body on developments in human genetics and their ethical, legal, social and economic implications. The HGC has noted the consultation on the HTA’s revised codes of practice and is grateful for the opportunity to provide input into the advice and guidance that the HTA provides to professionals. Having looked at the consultation questions and the consultation versions of the codes we do not have any specific comments to enter at the present time. However, we would like to acknowledge the value of the work that the Human Tissue Authority undertakes and the importance of the codes of practice issued by the HTA in providing guidance and advice in relation to activities governed by the Human Tissue Act. Yours sincerely, Professor John Sulston Acting Chair Human Genetics Commission HGC08/P20 – PAGE 6 OF 13
  • 7. HGC08/P20 – ANNEX C Professor Alan Fryer President, Clinical Genetics Society Clinical Genetics Department RLCH Alder Hey Eaton Road Liverpool L12 2 AP 9 October 2008 Dear Professor Fryer, Re: Genetic testing of children Thank you for your letter of 26 June. I apologise for the late reply. The Human Genetics Commission would be pleased to assist the Clinical Genetics Society in a programme of work in the area of genetic testing of children. In fact, it has already considered a possible contribution as part of its business planning process. As you suggest, one informative way forward would be to involve the HGC’s consultative panel and explore their views and experiences of genetic testing of children. The consultative panel meets on an annual basis and the next meeting will take place in May 2009 in London. However, it would be possible to explore other ways of involving the panel on this issue. In order to help the Commission think about how the panel might best be engaged, and how the Commission can contribute its own views, it would be very helpful to have further information on the work that the Society is planning to do and on timescales envisaged for this project. I look forward to hearing from you. With kind regards, Yours sincerely, Peter Mills Secretary, Human Genetics Commission HGC08/P20 – PAGE 7 OF 13
  • 8. HGC08/P20 – ANNEX D HGC08/P20 – PAGE 8 OF 13
  • 9. HGC08/P13 – ANNEX E Human Genetics Commission, 6th Floor North, Wellington House, 133-155 Waterloo Road, London. SE1 8UG tel +44 (0)20 79724351, fax +44 (0)20 7972 4300, email hgc@dh.gsi.gov.uk, web www.hgc.gov.uk Consultation on Retention of DNA and Fingerprint Data in Scotland (CRES 1058) Scottish Government Police and Community Safety Directorate 1RW St Andrew's House Regent Road Edinburgh EH1 3DG By email: forensic.review@scotland.gsi.gov.uk 21 October 2008 Dear Sir/Madam Consultation on Retention of DNA and Fingerprint Data in Scotland The Human Genetics Commission (HGC) is grateful for the opportunity to contribute to this consultation. The HGC is the UK Government’s advisory body on developments in human genetics and their ethical, legal, social and economic implications. As lead member of the HGC’s Identity Testing Monitoring Group, I have been asked to respond on behalf of my fellow Commissioners. Our response relates specifically to issues of DNA rather than fingerprints, in line with our remit. Since its establishment, the HGC has had a close involvement with policy issues relating to the collection, retention and use of genetic information for forensic purposes and has contributed to a number of consultations on proposals to revise legislation both in England and Wales, and in Scotland. Before responding to your specific questions, I would like to make two preliminary remarks. HGC08/P20 – PAGE 9 OF 13
  • 10. HGC08/P13 – ANNEX E The first is to recall the HGC’s earlier recommendations contained in ‘Inside Information – Balancing interests in the use of personal genetic data’ (May 20023), in particular, the need for robust safeguards against discrimination and misuse of information, and the importance of open public debate on any proposals for legislative change. In this connection, I would like to re-emphasise our overarching recommendation concerning the need for earnest public engagement – whilst we are aware that there is broad support for forensic DNA databases among the public, their existence raises important issues of balancing public and private interests, and depends upon widespread public confidence. We therefore support the Scottish Executive’s efforts to consult widely on possible revisions to the legislation. The second remark is that the HGC is currently engaged in the preparation of a report on forensic DNA databases. This follows our own consultation exercise, which closed on 7 November,4 which, in turn, followed a ‘Citizens’ Inquiry’ in the course of which a group of UK citizens came together to take evidence and discuss the issues they felt were most important with regard to forensic DNA databases. In order to draw out the differences in legislation and approach between England and Wales, on the one hand, and Scotland, on the other, parallel sessions were held in Birmingham and Glasgow. These took place over a number of weeks in early 2008, with the sessions being linked by live video. Whilst not wishing to prejudice the outcome of the HGC’s deliberations leading to our final report, the response below will attempt to assist by drawing on the HGC’s previous discussions and the findings of the Citizens’ Inquiry. I now turn to the specific issues raised in your published response to Professor Fraser’s timely and succinct review. Retention periods for DNA samples We await the imminent judgement in the case of S and Marper v. the United Kingdom, currently before the European Court of Human Rights. The outcome of this case is expected to have significant implications for the retention of DNA samples and profiles from persons not convicted of a crime. The two complainants in this case claim that the retention of fingerprint records and DNA samples obtained by police in the UK constitutes an infringement of their human rights under Articles 8 and 14 of the European Convention for the Protection of Human Rights and Fundamental Freedoms. (S, a juvenile, was acquitted of the offence with which he was charged and Mr Marper was not proceeded against.) The Court of Appeal in England and Wales previously found that whilst there was some minimal interference with Article 8(1), the interference was justified under Article 8(2). The Court also rejected the applicants’ submission that they had been treated in a discriminatory manner. 3 See especially chapter nine (‘Forensic uses of personal genetic information’), available at: www.hgc.gov.uk/Client/document.asp?DocId=131&CAtegoryId=10 4 See www.hgc.gov.uk/Client/Content.asp?ContentId=809 HGC08/P20 – PAGE 10 OF 13
  • 11. HGC08/P13 – ANNEX E The implications of a judgement from the Strasbourg court in favour of the complainants for the retention of DNA from all persons not convicted of a crime (including those proceeded against for a relevant sexual or violent offence) would need to assessed. Nevertheless, we would here reiterate the reasons given in response to Professor Fraser’s initial inquiry, specifically, that we are pleased to note that the Scottish Government is not contemplating allowing the indefinite retention of DNA data acquired from individuals not convicted of any crime. With reference to the appropriateness of the 3-year retention period for samples from those charged but not convicted of a sexual or violent offence we would emphasise, as we did in response to your 2005 consultation, the importance of distinguishing the considerations that attach to retaining biological samples, on the one hand, and those that attach to retaining DNA profiles, on the other. We would also reiterate our earlier conclusion that there should be a persuasive and fully articulated justification for retaining biological samples and that special safeguards should apply to them. We would therefore, provisionally, tend to favour the continuation of the present arrangements over their replacement with any more stringent arrangement. We would, additionally, wish the definition of the crimes for which samples may be kept without conviction to include a reference to their seriousness as well as the fact that they are sexual or violent, in a way that could be consistently operationalised. Retention periods for fingerprints The Commission does not have any comment about the retention of fingerprint and other forensic data except to observe that whist they may be used to perform the same function, fingerprint and DNA samples should not be treated as equivalent in all respects, as very different consequences may follow from the possession of an actual DNA sample and the possession of fingerprint and other forensic data. This does not mean, however, that it is wrong for fingerprints and DNA samples to be retained for similar periods in relation to the criminal justice status (e.g. convicted, not convicted, not traced) of the person from whom they were derived. Children’s Hearings In our initial response to Professor Fraser, we expressed the view that we had not seen convincing evidence to support the suggestion that expanding the DNA Database would deter young people from committing minor offences in the first place or deter young offenders from moving on to more serious criminal activities in later life. At the same time, however, we acknowledged that it might be appropriate to acquire DNA from young people in exceptional circumstances (i.e. serious violent or sexual offences). However, if this were to be the case, a limit should be placed on the retention period and, as we have already indicated, before such a move were agreed it should be subject to HGC08/P20 – PAGE 11 OF 13
  • 12. HGC08/P13 – ANNEX E thorough and specific consideration. It is therefore difficult for us to decide between your first and third options (no retention of children’s DNA/fingerprints or retention for a period of 3 years for relevant sexual or violent offences) but we would encourage any decision on this matter to be supported by the findings of new and robust research. Fixed penalty notices and other conditional offers Once again, we expect any judgement handed down in the S and Marper case, referred to above, to have implications in this area. We note, however, Professor Fraser’s observation (at p.19 of his report) that police direct measures (fixed penalty notices) ‘aim to provide speedy and effective sanctions for minor infringements of the law’ and that, in view of this, ‘sampling of DNA and fingerprints does not appear to be appropriate’. We remain concerned about the potential for arbitrariness and inconsistency involved in the acquisition and retention of DNA samples/profiles without due process resulting in a conviction. Furthermore, we are also concerned about the growth of the use of DNA profiling for increasingly minor offences and this concern would apply in relation to cases where the individual concerned in some measure accepts their culpability through acceptance of an offer by the procurator fiscal of a fiscal fine, compensation order, combined order or work order. In this case, we would especially wish to see arrangements that are based on robust and relevant evidence from research taken into account in reaching a judgement that considers not only the efficacy but also the proportionality of such an approach. Until and unless evidence suggests efficacy in extending the acquisition and retention of DNA samples for those receiving fixed penalty notices, we support the recommendation not to sample. Governance, accountability and transparency The HGC has consistently argued for greater transparency and accountability of arrangements for – and operation of – DNA databases. The main purpose of this is to allow the public to debate and to influence matters that have a significant social impact. However, the information placed in the public domain should be both accurate and meaningful in order to allow well-formed, evaluative judgements to be made about the utility of using DNA in the investigation of crime and prosecution of criminals, and to allow resources to be directed accordingly. The Commission is, again, likely to consider the types of information that would support such judgements in preparing its own report on the NDNAD. Measures to increase consistency in the use of police powers to take biological records or samples (and thereby to guard against arbitrariness and the potential for discriminatory treatment of individuals) are to be welcomed, although their HGC08/P20 – PAGE 12 OF 13
  • 13. HGC08/P13 – ANNEX E effectiveness will depend upon the specific measures in prospect. Our own Citizens’ Inquiry found a perceived need for more training of police officers in relation to the taking of biological samples and in relation to providing information to those from whom samples are taken. However, it should be noted increasing consistency of the use of powers does not itself address all potential for discrimination, for which structural safeguards need to be in place. We believe that there is a strong case for a body to be established in Scotland to fulfil a governance function similar to that of the National DNA Database Strategy Board, and that such a body should make appropriate reference to the Home Office’s independent NDNAD Ethics Group. The question of making statutory provision for the use of DNA and fingerprint data is also one that the HGC intends to address in its forthcoming report. Whilst the categories given seem appropriate for inclusion, we note that at least one (‘the identification of a deceased person or body part’) reaches outside strictly ‘criminal justice’ uses of the Database and has the potential to exert pressure for additional database expansion. Additionally, we would not want to foreclose at this stage the possibility of the Database being used for important and legitimate research purposes, although provision for this would need to be carefully considered and applications subject to an appropriate and stringent process of authorisation. In considering enacting legislation, attention should also be given to the equally important question of whether to place the establishment and governance of the database on a statutory basis. I am happy for you to reproduce this response and to quote from it in any report you publish in relation to the consultation. To comply with our open working style a copy of this response will be placed on the HGC’s website. Yours sincerely, Professor Stephen Bain Chair, Identity Testing Monitoring Group Human Genetics Commission HGC08/P20 – PAGE 13 OF 13

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