Genetic Medicine: 13th June 2013

The Parliamentary Under-Secretary of State for Health (Anna Soubry)
I congratulate my hon. Friend the Member for Mid Norfolk (George Freeman) on securing this debate and pay a warm tribute to him for the great work he does as the Government’s life sciences adviser. I also thank him for his kind words about me. I pay tribute, too, to my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown), who yet again, quite properly, advances the campaign of his constituent, Mr Les Halpin. There is much merit in that campaign, and my hon. Friend has brought it to the Floor of the House before, and so he should. We wish Les Halpin all the very best, and I pay tribute to the great work he has done and the valid points he makes in his campaign. I should also congratulate all the charities my hon. Friend the Member for Mid Norfolk mentioned that are concerned with prostate and breast cancer and Alzheimer’s disease; I pay tribute to them for all the work they do on those diseases, and all the campaigning work they do in advancing this topic.

It is a good time to hold this debate, but I fear I will not have enough time to address the subject in as much detail as I would wish. Numerous questions have been asked, and the usual rules apply: if I do not answer any of them, I will, of course, write a letter—or, rather, my officials will write a letter—to my right hon. Friend. I just called my hon. Friend the Member for Mid Norfolk my right hon. Friend, and why not?

George Freeman
That is very kind.
Anna Soubry
Yes, it is very kind of me.

It is a good time to hold this debate, as the development of genomic technologies, based on the individual’s genetic data, is a rapidly developing field that will bring benefits for NHS patients and the economy. The UK is a recognised world leader in scientific research in genetics, and the services that are available to NHS patients are among the best, if not the best, in the world. The NHS, in its unique position as a single, national health care provider, is ideally placed to harness this new technology and reap the benefits.

The data that are obtained from sequencing part of, or the whole, genome are limited in their usefulness unless they are linked to more information on the individual and the results of their treatment. That is why controlled access to patient records will be vital in our efforts to improve diagnostic capability, understand better the epidemiology—I hope I do not struggle in pronouncing that word—of disease and develop better health care tools and treatments.​

On generating more data, the issue of ensuring we protect data obtained from an individual’s DNA has been discussed in many different forums, including the 2009 Lords inquiry into genomic medicine in health care and the consequent work by the Human Genomics Strategy Group, which was led by the Department of Health.

In December last year, the Prime Minister announced that we would be the first country in the world to put in place a programme to sequence 100,000 whole genomes. That is part of a programme that will receive an extra £100 million in funding over the next three to five years. The result will be the building of safe platforms of data that will open access.

Now that it is becoming a reality, access to genetic data will continue to be a subject of keen interest to many. It is only right that it is debated on the Floor of this House because it is so important. As with other data, DNA sequence data will be governed by strict legal controls. It will not be shared with other parties in a form that identifies the individual unless there is a legal and appropriate basis for so doing, and where such a legal basis exists, the patient has the right to be informed about how their DNA sequence data are used. The sequencing information will be strictly controlled within existing NHS arrangements and managed in a way that protects patient confidentiality.

As I said, the raw read-out data are of little value to clinicians, researchers or indeed the industry if they cannot be linked to phenotype and clinical data, so we need to ensure that information-rich data sets are developed that have been value-added through linking genetic and genomic data to disease development, treatment and results. Data need to be made available in an environment that fully meets consent and data protection requirements. To ensure that we harness that potential as part of the growth agenda, which my hon. Friend mentioned, we must develop an industry ecosystem that helps to promote innovation within a healthy, competitive economic atmosphere, which respects data protection and consent boundaries and allows open data sharing for academic research.

While the protection of personal data is important, we should not forget that sharing data has immense benefits. Those patients with cancer or rare diseases who will have their whole genome tested as part of the Prime Minister’s initiative may well argue that they want more of their data to be shared, to help research into their condition and to help fellow sufferers. The recent review carried out by Dame Fiona Caldicott recognised that people’s concerns about what happens to their information, who has access to it and for what purposes, is hugely important; but people also raise ​concerns about why their data are not shared more frequently when common sense tells us all that it really should be. On the other hand, there was high level of anxiety among some clinicians about when it is safe to share information and what safeguards are required, including concerns about breaching data protection laws or threats to their professional status.

Clearly, a cultural change is required to rebalance sharing and protecting information in patients’ and service users’ interests. We believe that the Caldicott recommendations strike a good balance between the rights of the individual and the need to develop new treatments and services for the greater good. There is no contradiction between demanding rigorous safeguarding of personal information and enthusiasm about sharing information. We want to develop systems that provide open data from what we call safe platforms. There should be no surprises to patients or service users about who has access to their information, and they should be fully informed about their rights in relation to their data. That includes explaining to individuals how their information will be used, including de-identified information, and that it may be used for public health prevention and research, as well as providing assurance that any misuse will be tackled vigorously.

If we are to get better, less fragmented care and to harness the potential of genetic and genomic data for the benefit of all, any lack of trust between individuals, be they individual patients or organisations, in relation to their practice of information governance has to be overcome. The Department of Health research indicates clear public support for using health and care information in research to better inform and develop new treatments. We want to ensure that individuals retain consent to any use of their personal information. That is why we have asked the chief medical officer, Professor Dame Sally Davies, to retain oversight of the programme to sequence 100,000 whole genomes, to ensure that the patient and public interest is protected.

I pay tribute again to my hon. Friend the Member for Mid Norfolk. We could have a huge debate on this subject, and I apologise again that we do not have the time to take it further today, but as I said, I shall ensure that he has a response to all his questions. He has kindly provided me with many of them already, and my officials have compiled a long, long set of answers—far too long for this short speech. He will be in full possession of our responses, and I am sure that he will share them throughout the industry. I thank him again for all his hard work.

Question put and agreed to.