News
Consultative Panel
1 November 2007
In 2001 the HGC set up a Consultative Panel of people with direct experience of living with a genetic condition. Since it was established the Panel has proved invaluable to the Commission as a sounding board for reports and recommendations as a source of insight into the concerns of people with experience of genetic conditions. Much of the work is by correspondence. Panel Members are sent draft versions of HGC reports and asked for comment. The Panel receives 4 newsletters a year to ensure that everyone is kept fully informed about our work and once a year all members are invited to a Consultative Panel Event in London. The event gives Panel Members and Commissioners a chance to meet in person to discuss their views and concerns, as well as to help to identify future areas of work the Commission.
The Panel includes people who have been affected by a genetic condition in many different ways. Some have had experience of a single gene, chromosomal or multifactorial disorder which may have become apparent in either childhood or adulthood. Some people are affected themselves or are carriers, others are parents of children who are affected by a genetic condition, or full-time carers. The panel membership has a wide age range and includes people who live in England, Scotland, Wales and Northern Ireland.
If you are interested in finding out more and perhaps becoming a member of the consultative panel please contact the HGC for a form and either email it to us at hgc@dh.gsi.gov.uk or send it freepost to The Human Genetics Commission, 605, Wellington House, 133-135 Waterloo Road, London, SE1 8UG.
News
Other news
- Human Genetics Commission sets new standards for direct-to-consumer genetic tests
In response to the growth of the direct-to-consumer genetic testing market the HGC has produced a 'Common Framework of Principles' - Genetic Relatedness Testing (including paternity testing)
HGC issues information for people considering buying these tests - HGC Secretariat report May 2010
The May 2010 HGC plenary Secretariat report contains reports on developments on UK health and science policy related issues and on international developments compiled by the Foreign and Commonwealth Office Science and Innovation network. - HGC expresses support for Genetic Testing Registry
The National Institutes of Health in the US is seeking feedback on its plans to develop the registry - Huntington's disease more prevalent than previously predicted
States a recent Lancet article - We need to streamline the regulation of genomics research
HGC responds to call from Academy of Medical Sciences - England and Wales to move towards Scottish approach to police DNA retention
New legisltion to protect civil liberties is announced in the Queen's speech - 40th Human Genetics Commission meeting
The 40th HGC plenary meeting was held in London on 18 May - Can you advise the Government about the implications of developments in human genetics?
The HGC is looking for five new members to take up appointment later this year - 'Having a baby to save my child'
Pre-implantation genetic diagnosis in the news. - Preconception genetic testing
Joint initiative involving members of the HGC and UK NSC underway - HGC advice on the Government's use of science
Commission responds to GO Science consultation - 'Understanding Genetic Discrimination' seminar
Joint HGC-AHRC seminar draws out 'thought-provoking and challenging arguments' - It's time to put the police DNA Database on a proper statutory footing
HGC Report published - Government announces revised proposals for 'genetic probation'
Home Office proposals for the National DNA Database published - HGC publishes consultation on direct-to-consumer genetic testing
The HGC is consulting on a Common Framework of Principles for direct-to-consumer genetic testing services developed by an HGC-led international expert group - The HGC is coming to Liverpool
Join the audience for the HGC meeting in Liverpool on 23 September - HGC responds to consultation on Medical Profiling and Online Medicine
Read the HGC response to the Nuffield Council on Bioethics consultation - HGC responds to new proposals for the National DNA Database
Read the HGC's response to the Home Office's recent consultation - HGC survey of Preimplantation Genetic Diagnosis (PGD) funding
HGC is conducting a survey on the funding of PGD. The closing date for responses is 14 August 2009. - Seventh HGC Annual Report
The seventh HGC Annual Report has been published. The report details the Commission's work from April 2007 to March 2008. - HGC writes to the European Commission
The HGC reiterates recommendations about genetic tests covered by the IVDD Directive - HGC welcomes House of Lords Science and Technology Committee report on Genomic Medicine
Professor Jonathan Montgomery, Chair of HGC, welcomes Genomic Medicine report. - New Government proposals for the National DNA Database
The DNA records of innocent people are to be kept on the National DNA Database, but only for a limited time - European action in the field of rare diseases
Letter from the HGC Chair to UK MEPs ahead of debate on rare diseases - HGC statement on genetic testing and personalised nutrition
The HGC welcomes the statement issued by the Scientific Advisory Committee on Nutrition and has produced a statement in response - HGC responds to Department of Health consultation on HFE Regulations
The HGC has submitted a response to the Department of Health consultation on The Human Fertilisation and Embryology (Disclosure of Information for Research Purposes) Regulations 2009. - Proposals on the forensic use of DNA in Scotland published
The Scottish Government has published a report on its 2008 consultation on the acquisition and retention of DNA and fingerprint data - HGC wins award for public dialogue
HGC voted 'most engaged policy maker' - New Chair and Members of the Human Genetics Commission
Health and Science Ministers have announced the appointment of a new Chair and five new members to the HGC