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John Reid: Genetics statement in full
The full text of the health secretary's Commons statement on the genetics white paper.
"With permission Mr Speaker, I wish to make a statement about a white paper on genetics and healthcare that we are publishing today. The paper, "Our Inheritance, Our Future - Realising the potential of genetics in the NHS", is available from the Vote Office.
Today's white paper could not be published at a more appropriate time.
This year marks the 50th anniversary of the publication by Francis Crick and James Watson of the structure of DNA.
I begin by paying tribute to their work. DNA is the molecule of life from which our genes are made.
The discovery of its double helix structure set the stage for fifty years of world-changing genetic advances. It has allowed scientists to decode the human genome and to identify and sequence all the 30,000 or so genes which each of us carry in every cell of our body.
This gigantic task was completed earlier this year. The UK has played a leading role in this ambitious international project, with a third of the genome being mapped at the Wellcome Trust Sanger Institute in Cambridge.
Increasing understanding of genetics will bring more accurate diagnosis, more personalised prediction of risk, new gene based drugs and therapies, and better targeted prevention and treatment.
In time we should be able to assess the risk an individual has of developing the country's biggest killers - cancer and coronary heart disease - as well as those like diabetes which limit people's lives.
We will also learn more about how variations in our genes affect the way we respond to medicines.
Further down the line, genetics will lead to the development of new therapies aimed not just at treating disease in novel ways but also at preventing it.
Thus genetics has the potential to bring immense benefits for patients. Above all, genetics promises a more personalised approach to healthcare with interventions tailored to each person's own genetic profile.
This science therefore encourages us to develop the personalised NHS suitable for the 21st century that the government is committed to creating.
Our vision is for the NHS to lead the world in taking maximum advantage of the safe, effective and ethical application of the new genetic knowledge and technologies for all patients as soon as they become available.
This vision calls for an integrated strategy - a strategy that will support the generation of new knowledge and technologies; further develop centres of excellence in the NHS and facilitate the roll out of genetics into all NHS services; and all within the context of a rigorous regulatory framework and greater public understanding and engagement.
The White Paper sets out how this will be achieved.
I believe there is no other health care system in the world better placed to harness the potential of genetic advances than the National Health Service.
The values on which the NHS is based - providing care for all free at the point of use on the basis of need, not the ability to pay - are uniquely suited to capturing the benefits of the genetics revolution.
They provide a bulwark against the inequalities of private insurance-based health systems where the prospect of a "genetic superclass" of the well and insurable, and a "genetic underclass" of the unwell and uninsurable, unable to pay the premiums for medical care, is for many a very real threat.
Our NHS means that citizens in the UK can choose to take genetic tests free from the fear that should they test positive they face an enormous bill for treatment or insurance or become priced out of care or cover altogether.
Already in the United States of America, where 40 million people have no medical cover, developments in genetics have stirred precisely these concerns. As our understanding of genetics increases, the case for private health insurance as an alternative to the NHS weakens.
Thus scientific advance increasingly underpins the moral values which have long lain at the heart of a national health service.
I am today announcing that over the next three years, the government will invest an additional £50 million in England in developing genetics knowledge, skills and provision within the NHS. The white paper that we are publishing today sets out detailed plans of how that money will be spent.
The first step is to boost the capacity of NHS genetics centres. We will spend £18 million on a major programme to upgrade genetics laboratories. And we will expand the specialist genetics workforce with initiatives and investment to increase the number of laboratory scientists and genetics counsellors.
For patients to gain the maximum benefits from genetics, genetics knowledge and technologies will need to permeate the whole of the NHS. We will spur the take-up of genetics by other specialties by spending over £7 million to support new genetics initiatives in primary care and mainstream NHS services such as cancer and CHD.
And we will set up a new Genetics Education and Training Centre which will work with the professional bodies to ensure that all NHS healthcare staff receive appropriate education and training in genetics.
The White Paper also sets out our intention to fund further research to help convert genetic discoveries into improved patient care. We will invest £4 million in pharmacogenetic research on existing medicines and we will set up a new chair and university department in pharmacogenetics.
The most common inheritable single gene disorder in this country is cystic fibrosis. There are 7,500 children and young adults with this distressing condition in the UK.
There is no cure and sufferers rarely survive beyond their twenties. We will provide a further £2.5 million over the next five years to help find a gene therapy cure for cystic fibrosis.
And we will make available a further £3 million to support gene therapy research on other single gene disorders, and £4 million on gene therapy production facilities for NHS and other public sector researchers.
But realising the maximum health benefits of genetics will require more than just support and investment in NHS services and in research. It can only be achieved if breakthroughs by the scientific community are matched by public support and understanding in the wider community.
Against a background of great promise, we recognise that genetic advances bring very real ethical and social concerns. We are committed to providing positive safeguards to address those concerns.
We have in place an integrated and robust system of regulation. We have already taken action by introducing a moratorium on the use of genetic test results by insurance companies. And we have passed legislation to ban human reproductive cloning - one of the few countries in the world to have done so.
Above all, the Government is committed to ensuring openness and transparency in genetic policy making. In 1999 we set up the Human Genetics Commission. Last year the Commission produced a major report on the use of personal genetic information.
They identified the growing danger of DNA theft, whereby sensitive information about a person could be gained by stealing their DNA through for example discarded hair and then testing it without their knowledge or consent.
The commission recommended that this should be illegal. I am able to announce today that the government has accepted this recommendation. We will introduce legislation to make it an offence to test a person's DNA without their consent.
The new offence will apply in all circumstances except as part of a person's medical treatment where consent is impossible to obtain, or the lawful use by police and courts.
A core ethical principle in HGC's report is that no one should be unfairly discriminated against on the basis of their genetic characteristics.
The government wholeheartedly endorses this principle. We accept the HGC's recommendation to review the evidence and consider the appropriate means of addressing concerns in this area.
By accepting these two key recommendations of the Human Genetics Commission, I hope that I have demonstrated the government's willingness to engage in a genuine dialogue on genetics issues. We need not fear genetic advances if we debate the issues openly and put in place the proper public protections today.
We are standing on the threshold of a revolution in healthcare. By working together, by building on our strengths, by making the necessary investment and careful preparation now, I believe that genetics can deliver real and lasting benefits in health and healthcare for all of us.
I commend this white paper to the House."
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