APPENDIX 26
Memorandum submitted by the Human Genetics
Commission in response to questions from the Clerk of the Committee
INFORMATION ON HGC RESOURCES
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.
OPENNESS AND
CONSULTATION
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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