Select Committee on Science and Technology Fourth Report

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.  Back

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