Human Genetics Commission

The Human Genetics Commission described itself as "the UK Government's advisory body on new developments in human genetics and how they impact on individual lives. We give the Government advice on human genetics with a particular focus on the social, ethical and legal issues."

The HGC was established in 1999 following a comprehensive review of the regulatory and advisory framework for biotechnology by the UK Government in May 1999.

The HGC was closed down following the UK government's review of Arm's Length Bodies. In 2010 the chair, Jonathan Montgomery, wrote to the HGC Commissioners to tell them of this news, saying "This shift reflects the need to reduce costs and I would like to reassure you that I do not believe that it reflects a change in the Government’s attitude towards genetics and genomics."

In its Final Report of 2012, the chair, Prof Jonathan Montgomery, emphasised its success in influencing policy:

Since its creation in 1999, the Human Genetics Commission (HGC) has played an important role in helping UK Governments and the wider public grapple with the issues opened up by advances in our understanding of human genetics. Its work has led to policy and legislative changes, and the principles that have underpinned its reports have established a framework for responding to the possibilities that our enhanced scientific knowledge is creating.

In 2012 the UK government replaced the HGC with a new committee, the Emerging Science and Bioethics Advisory Committee (ESBAC). According to an article for BioNews, "While ESBAC will take on the responsibilities of the HGC, it also has a broader remit than human genetics."

People

From HGC website of 24 February 2010:

Chairs

• Professor Jonathan Montgomery - Chair
• Professor Sarah Cunningham-Burley - Vice-Chair

Members

• Professor Timothy Aitman - Professor of Clinical and Molecular Genetics at Imperial College London, and Head of the Physiological Genomics and Medicine Group at the MRC Clinical Sciences Centre.
• Professor Thomas Baldwin - Professor of Philosophy, University of York.
• Dr Paul Debenham - Director, Technology and Innovation, LGC
• Mrs Nicola Drury - Genetic Counsellor Nottingham Regional Clinical Genetics Service and Genetic Education Facilitator East Midlands Region for NHS National Genetics Education and Development Centre (NGEDC).
• Dr Frances Flinter - Consultant Clinical Geneticist and Caldicott Guardian, Genetics Department, Guy's and St Thomas' NHS Foundation Trust
• Mrs Ros Gardner
• Professor John Harris - Professor of Bioethics, School Of Law, University of Manchester
• Caroline Harrison - Barrister
• Professor Lisa Jardine (ex officio) - Chair, Human Fertilisation and Embryology Authority.
• Mr Alastair Kent - Director, Genetic Interest Group (GIG).
• Professor Anneke Lucassen - Professor of Clinical Genetics and Honorary Consultant Clinical Geneticist, University of Southampton Cancer Sciences division and Wessex Clinical Genetics Service.
• Dr Duncan McHale - Vice President, Translational Science, AstraZeneca, Chair of the European Industry (EFPIA) Pharmacogenetics group, member of the International Conference on Harmonization genomics group and member of the MRC Pharmaceuticals Forum.
• Dr Alice Maynard - Managing Director of Future Inclusion organisation.
• Dr Lola Oni OBE - Professional Services Manager Heamoglobinopathies, Brent Sickle Cell/Thalassaemia Centre

Publications

• HGC (2010), Intellectual Property and DNA Diagnostics: A Report of a Seminar on the Impact of DNA Patents on Diagnostic Innovation, October. This report was launched with the Science Media Centre. The report summarises a seminar convened by the Human Genetics Commission in October 2010 on the impact of DNA patents on diagnostic innovation. The report states, "The seminar revealed a profound tension between the industry’s desire to exploit the financial value of biomarker patents and the routine infringement of such IP [intellectual property] in NHS laboratories. This tension between public and private interest is reflected in the academic research community which, supported by public policy, continues to patent publicly-funded biomarker discoveries in the hope of capturing their commercial value."

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