Select Committee on Science and Technology Appendices to the Minutes of Evidence


Memorandum submitted by the Human Genetics Commission in response to questions from the Clerk of the Committee


What resources does HGC currently have at its disposal in terms of finance, staff and facilities?

  1.  The Commission is served by a Secretariat based in the Department of Health, supported by contributions from the Office of Science and Technology, Welsh Assembly and Northern Ireland Assembly. The Scottish Executive has recently transferred PES provision covering their contribution for HGC to the Department of Health.

  2.  HGC's total budget for 2000-01 is £425,000.

  3.  The Secretariat consists of four full time staff—2 IP4 (Grade 7 equivalent scientists, one of whom is on secondment from OST), 1 IP3 (HEO equivalent), 1 IP2 (EO equivalent), as well as shared secretarial and administrative staff (0.5 of an IP2 (Senior Personal Secretary) and 1 IP1 (AO equivalent)). The staff budget is approximately £175,000.

  4.  The remainder (£250,000) is devoted to servicing the Commission, holding open meetings and consultations, HGC's Press Office and taking forward the Commission's work programme.

  5.  In 2001-01 the Commission's work also benefited from £100,000 from the Department of Health's Public Health Development Fund and from the R & D budget (£2,500).

Do you feel that these resources are sufficient to effectively carry out the role assigned to you by Government? If they are not, what further resources would you require.

  6.  The Commission does face some potential resource constraints. This is in part due to the increasing number of complex and controversial issues—not least the use of genetic test results in insurance—and also because the Commission's desire to fully consult and involve the public and wider stakeholders.

  7.  The HGC was one of three strategic oversight bodies set up in 1999 following the Government's review of the advisory and regulatory framework for biotechnology.[8] The review (paragraph 53) estimated that each new body should have a budget of approximately £100,000 for day-to-day expenses and a Secretariat of four or five staff, preferably with some scientific expertise.

  8.  The current Secretariat and projected non-manpower budget for HGC comfortably exceeds that estimate. It is in line with that for our sister strategic advisory body, the Agriculture and Environment Biotechnology Commission and slightly larger than HGC's predecessor, the Human Genetics Advisory Commission (HGAC).

  9.  The Commission has consulted on and agreed an ambitious work plan focusing this year on the storage, protection and use of personal genetic information. Ministers also asked HGC to conduct a review of the wider social and ethical issues relating to genetics and insurance. Added to this, there is some work that was inherited from the former Advisory Committee on Genetic Testing when it was absorbed into HGC with Ministers.

  10.  The Commission had not anticipated the complexity of both of these additional areas of work and the need to reflect views and developments across the United Kingdom and internationally. The Commission is also faced with the rapid pace of change—for instance the completion of the Human Genome Project had been anticipated in 2003. Instead the completion of the "first draft" of the sequence was announced last year and published recently. This milestone has enormously increased the media and public's awareness of the issues.

  11.  The Commission also needs to interact with a number of other bodies, for example the Human Fertilisation and Embryology Authority, the National Screening Committee, the Information Commission, and wider groups such as the Wellcome Trust and the Nuffield Council for Bioethics.

  12.  Work on these has had to be taken forward in parallel with other priorities, for example work on a public involvement strategy. It has meant running the main Commission, three sub-groups and a working group on personal genetic information. Inevitably, there has had to be some re-prioritisation of work, which has been overseen by a business committee, chaired by Vice-Chair of HGC.

  13.  One important resource that must not be over-looked is Member's time. All of the Members serve the Commission on a part-time basis. When applying, Members were expecting to devote approximately six days per year to the main Commission meetings and subgroups. In the first year the Commission held at least 24 meetings (main meetings, subgroups and consultation meetings). Although no Member attended all meetings, some attended 10 or 12 with additional time needed for travelling and preparation (reading and commenting on papers). Members of the Commission are also increasingly being invited to give presentations on the work of the Commission at a variety of public meetings.


  14.  The Government's review of the biotechnology regulatory framework made clear the importance of open and transparent working. However, the review may have underestimated the cost of this (the report estimates £600,000 per year across the whole of the Government regulatory framework).

  15.  The Commission has embraced the need to conduct business in an open and transparent way and to engage with the public. It has, in particular, recognised the need to be pro-active and to encourage the involvement of groups that have traditionally not attended public meetings, such as young people and individuals from ethnic minorities. HGC's first major public consultation aimed to include young people as well as the wider public in the North-East of England.

  16.  The Commission has already held three consultative meetings in public and will from 2 March be conducting all of their main meetings in public. This is an important element of their work, but it is time-consuming for the Secretariat and incurs additional costs for room hire, catering, audio-visual equipment and publicity. From the first year of work, it is apparent that holding public meetings in London, costs £3-5,000 more than a normal Committee meeting. The costs will increase for meetings outside London. The Commission's major consultative meeting in Newcastle cost an estimated £30,000. The Commission may need to consider paying a conference organising company to arrange its public meetings, but this would need to be funded from existing resources.

  17.  HGC has also decided to establish an external press office, currently run by Citigate Westminster, who provide a standard press office service to the Commission. They also provide advice on publicising meetings, publications and events of the Commission. These additional costs must be met from the Commission's running costs.

  18.  The Commission wishes to explore various other awareness raising activities, such as newsletters, schools projects, an interactive website, citizen's juries, and other qualitative opinion gathering mechanisms. These do have significant resource implications that may need to be funded from other sources or conducted in partnership with other bodies.

  19.  One key element of this is the intention to establish a "Patient's Panel" to seek the view of a representative cross-section of those affected by genetic disorders. This may need to be recruited and funded by an outside organisation.

  20.  All of these elements will be addressed in the Commission's strategy for public involvement in genetics. This has not progressed because of the need to focus priorities, but is perhaps one of the key priorities facing the Commission.

  21.  The Commission has benefited this year from an allocation from the Public Health Development Fund to promote open working. This has been spent on a survey of the People's Panel and on outside consultancy costs for the public meetings in Newcastle and London. A small amount of R & D money was also used to prepare a detailed report on overseas legislation.

  22.  There is no guarantee that the Commission will be able to call upon similar funding in 2000-01. However, the ability to conduct large-scale surveys and to initiate detailed research at short notice may well be a useful in a number of areas. One approach that has been suggested for the latter is to establish an "intern" arrangement to supplement the Secretariat with a recent graduate or under-graduate (sandwich student) wishing to gain experience of the Commission's work on the wider implications of human genetics.

  23.  In summary, the Commission will need to consider the existing resources and the need for additional funding to avoid delaying progress with key priorities or constraining its ability to effectively engage the public in considering the wider implications of developments in human genetics. The work of the Commission in engaging the public in debate is costly and we rely on your support in securing further resourcing.

2 March 2001

8   The Advisory and Regulatory Framework for Biotechnology: Report from the Government's Review. Cabinet Office and Office of Science and Technology, May 1999. Back

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