Genomic Medicine: S&T Committee Report

Lord Bishop of Newcastle Excerpts

Wednesday 9th June 2010 Lords Chamber

[The Lord Bishop of Newcastle]

My Lords, I, too, am pleased to have the chance to contribute to this debate and I want to thank the noble Lord, Lord Patel, and his colleagues for the excellent work set out in this report. I am pleased to be here not only because of the importance of the rapid advances in genomic medicine in recent years, but also because it enables me to pay tribute to some of the groundbreaking work that is being undertaken in my home city of Newcastle upon Tyne at the university, in the Centre for Life and in our NHS hospitals.

The links between genetic make-up and the diseases that afflict us are clearly established and I for one, as a non-specialist, am becoming much more aware of the possibilities that advances in molecular genetics seem to offer for the understanding, prevention and treatment of a wide range of complex diseases. I am aware of the advances that are being made so rapidly despite the very considerable complexities involved. I am also aware of Professor Sir John Burn and his work in identifying people with the gene that causes an inherited form of colorectal cancer, and of the clinical trials to test aspirin and a form of starch as inhibitors of the disease. That opens up the possibility of using simple food additives to prevent the development of that particular type of cancer.

Another area of research in Newcastle has been into a degenerative brain disease which it was previously assumed was a form of Parkinson’s or Huntingdon’s disease. Only by studying in great detail the individual genetic make-up of a large family was it possible to determine the cause of the disease and identify the genetic markers for it. Other research at the Centre for Life in Newcastle has involved the use of highly sophisticated genetic analyses of a large number of families to identify how genetic variability between individuals contributes to the risk of developing cardiovascular disease both in childhood and adulthood. None of those would have been possible without the DNA technologies that have been developed in the past 20 years, and I cannot help but wonder what the next 20 years will bring.

The advances in our understanding have been little short of extraordinary in the first years of this century, and rightly these advances have given rise to much excitement and enthusiasm. But they also give rise to a number of important issues which are addressed in this helpful report, so I will make a few points about some of the recommendations. First, I turn to the recommendation that the Office for the Strategic Coordination of Health Research should be tasked to,

“take the lead in developing a strategic vision for genomic medicine in the UK with a view to ensuring the effective translation of basic and clinical genomic research into clinical practice”.

That is a really good recommendation, but in the current climate of the culling of quangos, it is necessary to ensure that this body or any other is adequately funded for that purpose. Money spent on getting the strategic vision right is likely to save many times that amount in both waste and application in the absence of such a strategy.

The report also recognises the variety of stakeholders and institutions that are already active in the field of genomic research. It is essential for the public good that we,

“should identify the barriers to collaborative working between academia and the pharmaceutical and biotechnology industries”—

and the NHS—

“and ways of removing them”.

The first part of that task will be much more easily achieved than the second, but barriers to collaboration will have to be overcome. The recommendations that identify the changes required to incorporate genomic medicine into mainstream NHS are good, but they, too, inevitably will require an increase in personnel and resources if we are to obtain the best possible outcomes.

For genomic medicine to achieve optimum effect, it is important that a large database is established which is reflective of the population of the United Kingdom. Individuals agreeing to their genetic information being stored and used for research purposes must, of course, give their informed consent. Since, however, the potential uses to which their genetic information may be put are impossible to identify, unless the consent agreement is restricted to immediate and specific research, that raises a number of key questions. How informed is an individual’s consent if he or she does not know how the information is to be used? Is it right to ask for broad or blanket consent unless the individual is aware of the range of possible research projects? For example, information may be used to help research into cancer treatment, but it may also be used to aid antenatal diagnosis of disease that may provide the basis for an abortion. While some people may not have a problem with this, others most certainly will. And yet, at the same time, to restrict consent to certain types of research programmes may be overly prescriptive and impractical to police. We need a fuller debate in this area.

The report goes on to suggest that it is not necessary to introduce legislation to ban genetic discrimination. I remain to be convinced about this because if discrimination is rightly banned on the grounds of race, gender, disability or sexual orientation, then why not here? It would be possible for an employer to seek genetic information on current or future employees and then to make employment decisions based on that information. Can that be right? For people who have, for example, the gene for familial colorectal cancer or a gene which contributes to the likelihood of developing cardiovascular disease, this could lead to employers not wanting to employ—or certainly not wanting to invest in the training of—people who have those genes. Each of the genes would give a different risk of developing the disease and, in one case, there is a lifestyle contributory factor too. Would an employer be able to distinguish between some of the subtleties and the nuances? Surely it is too complex an area not to regulate through legislation.

Similarly, the recommendation that companies supplying direct-to-consumer tests should self-regulate rather than be subject to statutory regulation is highly questionable. Self-regulation has already been found wanting in other areas of public life; what leads us to think that commercial companies would be any good at it here? The potential for misinformation is too great to be left to companies, whose main aim, after all, is to make a profit.

When the first draft of the human genome was published in 2000, President Clinton described it as,

“the most wondrous map ever produced by mankind”,

and Prime Minister Tony Blair hailed it as a,

“revolution in medical science whose implications far surpass even the discovery of antibiotics”.

While of course, as we have heard, some genetic sequencing still remains to be completed, the past 10 years suggest that Clinton and Blair were not overengaging in hype. That is why I welcome the report. Although I am not sure about all the recommendations within it, it is an important step as we embark on the next stage of the exciting developments in genomic medicine.