CHAPTER 9: Concluding remarks
9.1 Chapters 3 to 8 each end with a section setting
out our conclusions on the subject matter, giving the context
for the detailed recommendations. For convenience, all those recommendations
are repeated in Chapter 1. In summary, they deal with the actions
we see necessary:
(a) to balance the legitimate concerns of individuals
about privacy with the equally legitimate needs of society to
understand health and to manage disease; and
(b) to ensure that appropriate human and financial
resources are available for genetics research.
This Chapter summarises our various conclusions to
give our overview of the field that we have been investigating.
9.2 We are in no doubt about the fundamental importance
of the field of genetics. Through a timely initiative by The Wellcome
Trust helped by various arms of government, the United Kingdom
is playing a leading role in a revolutionary area of medical research.
There is the certain prospect of improved health care and disease
control. There will be better drugs and better use of drugs. There
are excellent commercial prospects for UK industry. Beyond these
material benefits, there is also the intellectual excitement of
a major step forward in understanding of the nature of life.
9.3 There may well be those who seek to abuse this
knowledge commercially or otherwise, but that is all the more
reason to acquire the understanding necessary to control or counter
what we consider to be wrong.
9.4 We are sure that nearly everyone will wish to
help the progress of medical research provided that they and information
about them are treated with respect. Indeed, we feel that members
of society have a moral obligation to do this, as long as it is
not to their personal detriment.
9.5 We do not want medical research to be hamstrung
by burdensome bureaucratic procedures. To simplify and clarify
the arrangements, we believe that there is a place for a new independent
body with both lay and professional representation to advise the
Government and the Data Protection Commissioner on the use of
personal medical and genetic data and, as appropriate, to approve
use of such data for research or other health service purposes.
9.6 It is important for the United Kingdom not to
miss the opportunities that are before us. We could do so easily
in several ways.
(a) We must resist inappropriate regulation of
the use of medical data. This is a sensitive and difficult area,
but our Report offers a way forward.
(b) We might also fail to capitalise on the information
treasure-house of the NHS. In spite of its immediate and pressing
problems, the NHS must look to the future and get its data-handling
arrangements up to date[71]
- not only for the purposes of genetics research but also for
wider healthcare benefits.
(c) There is also scope for failure in simply
not having enough people to meet the novel and truly massive computational
challenges of genetics research. The scale of these challenges
may not be fully appreciated by those from a traditional medical
or biological background. Finding the right people to tackle them
means not only sending the right signals to education providers
but also paying appropriately in the market for these presently
scarce skills.
(d) We have to recognise that present patenting
definitions and conventions were drawn up before the advent of
genomics which has brought a new dimension to the complexities
of recognising what should be patentable. We have to ensure that
patenting gives protection to those who are prepared to invest
to develop new products but, at the same time, we must avoid patents
that stifle research and legitimate investment by others.
(e) New developments are coming thick and fast
in this area, and there is a danger that any procedures we adopt
today will rapidly become out-dated. The Government must keep
alert to this possibility and take steps to avoid it.
9.7 These scientific advances offer real opportunities
to all parts of society. We should grasp them with vigour.
71 As noted in paragraph 5.11, Scotland is ahead of
England and Wales in already having a single information structure.
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