Genomic Medicine: S&T Committee Report

Lord Sutherland of Houndwood Excerpts

Wednesday 9th June 2010 Lords Chamber

[Lord Sutherland of Houndwood]

My Lords, I, too, congratulate my noble friend Lord Patel and his colleagues on producing an excellent report. I also congratulate my noble friend on a judicious, clear and dazzling introduction, not least to those of us who are not specialists in the field. As chairman of the Science and Technology Select Committee I had the privilege of ex officio and visiting membership of the sub-committee. It gave me, along with the reports I received, ample evidence of a fine and important report in gestation, which has now come to birth and is before us.

I thank those who submitted evidence to the committee—those 140 individuals and 110 groups who took the time and effort. I simply ask your Lordships to look at all 640 pages of volume 2. It is a heavy and weighty tome in every sense. This is the distillation of scientific expertise, information and knowledge of which many a government around this world would be deeply envious. Please pay detailed attention to it. It tells a very important story. I wholly endorse the points made by my noble friend about the importance of bioinformatics and institutional development in this area. It is essential that we seize the opportunities which our scientists and technologists have given us.

This series of submissions leads me to be briefly political—with a small “p”. My first political point to the Government is that this is evidence of a strong, informed and powerful national interest in these topics. It will continue to subject government policy and practice to scrutiny, along, I hope, with the help of future emanations from the Science and Technology Select Committee. This issue will continue to be scrutinised in some detail.

The second political point—with a small “p”—is not quite as direct to the Minister, but a request to him to carry a message back. A measure of the impact of the report of the Science and Technology Select Committee is to be found, first, in this volume of evidence, and, secondly, in the subsequent reports from those who gave evidence in the first place in response to the Government’s reply. This is a measure of the impact of the importance of this committee. It is an impact which goes far beyond this Chamber. Will the Minister draw this to the attention of those who are charged with making proposals for the reform of the House of Lords? An elected House, which would have no room for the calibre of scientific expertise and wider scientific engagement which this committee attracts, would be a much impoverished House. That point needs to be before those who are to think about the future shape of this House.

However, perhaps I may slightly deviate from my noble friend Lord Patel, who expressed his disappointment eloquently on the government response. That was a relative disappointment: I simply have to add that if noble Lords had seen some of the government responses that I have seen over the years, this is pretty good. At least there are some proposals which suggest that the previous Government were interested in moving forward in this area, which are to be welcomed. The fact that there is a good, considered government response, although it does not agree on all points, is a civilised way of advancing debate on this important and complex topic. I shall come to this issue shortly.

As other speakers have indicated, I should like to say a word first on the broader context which we inhabit. In scientific terms, the context is one of significant scientific advance in this country and elsewhere. There are fruits to be cropped here of huge significance; namely, medically, the health of the nation, commercially for the economic health of the nation and so on. These advances give us the capacity over time to extend the range of medical treatments and the good health of the nation. It should be noted that most of the advances proposed in this report are potentially part of that holy grail of preventive medicine—that after which we all seek and strive, but to which we seldom pay sufficient attention. Preventive medicine is to be preferred to the rather more expensive remedial alternative. Again, this report gives a direction of travel if we are to make the most of that. That is the scientific context.

The economic context is well expressed in the perhaps ill judged joke—“Sorry there's no money left”. However, the truth of this is evident to all of us—we are in times of severe financial constraint. That constraint allows various responses. One response is special pleading on our part and I have no doubt that there will be a fair bit of that. There will be special pleading to say that this is important, and it is, but that is not the direction I wish to follow now. A second response is to cut and slash percentagewise across the board, which would be ill considered in this area. Let us be strategic in our thinking.

There are other responses, but the third, on which I want to focus, is that this constraint gives us an opportunity to consider future strategies in some detail. I hesitate to go so far as to say that this is the silver lining in the financial clouds, which would be rather overoptimistic, but there is the possibility of taking time for careful, calm and deliberative thought. We can be sure, for example, that no ambitious Minister will be ready to make his or her name with a promise of high-profile, short-term spending which has not been properly evidenced or evaluated, as we had before the election with suggestions around the House for spending on the long-term care of groups within the community—political stunts that did not bear discussion. We are absolved from the likelihood of that because of the financial picture within which we live. A time of financial retrenchment is a time when the backroom engine should be devoted to long-term planning and priority setting. It is not necessarily a time to say, “Let’s not discuss this, we can’t afford it”. It is a time to think through to the future when we hope we will be in better times.

In this spirit I warmly welcome the previous Government’s pre-election proposal to create a human genomics strategy group. I know that we wanted a White Paper—it would be good to have that too—but I see the potential value of such a group. Does this proposal have the support of the coalition Government? If not, why not? Perhaps I may be optimistic. If it does, might we first work on the remit and the membership of such a strategy group? There could be a very good starting point in asking the group chaired by my noble friend Lord Patel to give advice to the Government on what such a remit should be. It is not easy and completely obvious how best we should advance on this. My view is that the remit should not simply be confined to questions of a scientific, medical and technical nature—they should be central but not exclusive. I shall supplement my own suggestions on these issues by referring to the work of Generation Scotland, whose advisory board I have the privilege of chairing. Generation Scotland has a significant presence at my noble friend Lord Patel’s university, Dundee. It works in consort with the other Scottish universities with medical schools—Aberdeen, Edinburgh and Glasgow—and alongside the National Health Service for Scotland.

The intention is to build a database, which is complementary to the UK Biobank, but different in important respects. Largely through general practices in Dundee, Aberdeen and Glasgow, so far more than 15,000 families—I stress “families”—have been recruited to this study, which amounts to more than 70,000 individuals. Through genetic screening a picture is being built up of the correlation between family genetic inheritance and the medical histories of those families. It puts on to an evidential scientific basis the information that, informally and tentatively, a GP tries to piece together by asking when your parents died and, if you know, why they died. This is a scientific approach to providing data that will correlate genetic inheritance with perceived and actual illness patterns within families. The potential benefits are huge both for knowledge and for treatment.

So much for the example now happening in Scotland, and I draw on that, but what is its relevance to the proposed human genomic strategy group? One central conclusion I have drawn is that the oversight of such matters requires more than technical and scientific expertise. Certainly these are both central and essential, but a whole penumbra of related questions arise that may require much more than simply expertise in the scientific and technical context. They are issues of commercial exploitation—already referred to—of data sharing; of ethical principles and informed consent in relation to data sharing; and issues around the future shape of healthcare and the appropriate training and manpower needs that will arise as a result. There is a temptation to shunt all of these off to specialist committees, but it is too early to do that. A human genomic strategy group should be charged with recommendations not simply for the short term—tomorrow—but for the next decade and the decade after that. The issues of science, healthcare, commercial exploitation, ethics and regulation all bear on each other and would benefit, at least initially, from being considered in the round rather than by competing specialist committees that can easily become policy silos. In passing, I have to say that the sceptic in me does not think that there is such a thing as, for example, an ethical expert. There are experts who can aid ethical discussion, but ethics is a matter for the wider community and should not be shunted off to be considered by a separate body absent from those who know about the technology.

That is why I believe that the human genomic strategy board, if it is set up, would have important work to do and why its remit and membership should be a matter of careful discussion and decision-making. Since we cannot afford initially to commit hugely significant sums of money, we have the opportunity for thoughtfulness through this mechanism. I look forward to the Government’s response to this suggestion.