June 24, 2003

scientists respond to genetics white paper

The Government White Paper on Genetics has outlined a major expansion of the use of genetic technology to tackle medical problems.

Professor John Burn, Clinical Director of the Northern Genetics Service of the NHS and member of the Human Genetics Commission, said:

“I welcome this investment in our regional genetics service – not least because it reflects the Government’s recognition that we have one of the best genetics networks in the world.”

Dr Simon Festing of the Association of Medical Research Charities, said:

“It is good to see the Government dealing with the genetic gremlins like discrimination. We welcome the measures in this White Paper. With properly-funded research, there is real potential to alleviate the suffering of patients and treat diseases more effectively in the future.”

Alistair Kent, Director of the Genetic Interest Group, said:

“The investment in gene therapy is terrific – not least because it is evidence of a commitment to the principle that this therapy can deliver real benefits to families. £50 million is a drop in the ocean, but it’s an important drop that can help provide the infrastructure that will allow the NHS to determine which people can benefit most from these new therapies.

“On banning the theft of DNA , there needs to be a balanced approach. While this may be necessary to protect celebrities from prying newspapers, criminalizing desperate fathers trying to prove their paternity may not be the best approach.”

Dr Mark Walport, Director of the Wellcome Trust, said:

“We are delighted that the government is making such a large financial commitment to translating human genome information into real health care benefits. This effort complements our own continuing investment in genome research and in projects like the UK Biobank, which are of crucial importance if we are to exploit this knowledge for the public good.”

Professor Veronica van Heyningen, Head of Cell and Molecular Genetics at the Medical Research Council Human Genetics Unit, said:

“It’s a great pleasure for those of us engaged in human genetics research to see that there will be increased resources to support the translation of our research into everyday medicine.

“In particular, we welcome the increased resources for training genetics counsellors and new lab staff for improving the delivery of health care. This helps to bring to fruition the progress in human genetics research over recent years.”

Dr John Newton, Chief Executive of the UK Biobank project, said:

“The health of future generations depends on the foresight of today’s researchers and their funders. The UK Biobank will be among the first and certainly the largest post-genome resource to study the roles of both nature and nurture in health and disease. As a population study, it will be used by the research community to generate the practical intelligence required for 21st Century public health strategies. Responsibly run projects like the UK Biobank are essential if we are to make the best use of the human genome information. They will help ensure that the opportunities for public health provided by these new developments are not squandered.”

Professor Steve Humphries, London IDEAS Genetics Knowledge Park, said:

“We know that there are more than 100,000 people in the UK with a significantly raised risk of a heart attack because of inherited high cholesterol. This condition is caused by a variety of mutations on at least three different genes. Tracking these people down and offering them treatment and lifestyle advice will save hundreds of lives a year. This is the sort of practical preventive medicine the new genetics makes possible.”

Dr James Mackay, NE Thames Clinical Genetics Service, said:

“Breast, bowel and ovary cancers are some of the first common diseases found to have a major genetic component. We’re only now learning to overcome the difficulties of delivering cancer genetics services to large numbers of people, and giving them accurate information. What is urgently needed are some sound, well-funded pilot studies, so that we can develop the best way to deliver services, and give patients the information, counselling and treatment they need. It is not just the science, it is what you do with it.”

Dr Tom Shakespeare, Director of Outreach for the Policy, Ethics and Life Sciences Research Institute, University of Newcastle, said:

“The government are making all the right noises about exploting the benefits of genetics while avoiding the dangers. Scientists and doctors will welcome more funding, and ethicists will welcome safeguards against genetic discrimination. But the open question is whether either gene therapy or pharmaco-genetics will ever fulfil the huge hopes and expectations of both researchers and scientists. Early hype proved premature: turning DNA research into genetic health benefits is much harder than anyone ever imagined.”

Dr Graham Laurie, School of Law, University of Edinburgh, said:

“Prohibiting the unauthorised testing of an individual’s DNA without their consent is shrewd PR because of the public’s concern about uses of genetic data. However, this move will also perpetuate the view that genetic information is somehow unique and different from other forms of personal information. But our family histories and the colour of our hair and eyes are forms of genetic information – so how should we define which forms of genetic data will be protected by this new law?

“It is also deeply ironic that the Government has specifically excluded from protection any genetic material that has been obtained as part of a research project or by the police. This will be accessible by obtaining the necessary court authority, and is actually a specific rejection of the Human Genetics Commission’s advice, which voiced deep concern that this may deter people from participating in genetic research. The thin guarantee in the White Paper that this measure would only be used in exceptional circumstances is unlikely to placate public opinion where the perception of abuse looms large.”

Professor Sir George Radda, Chief Executive of the Medical Research Council, said:

“”Fifty years since Watson and Crick discovered the structure of DNA, it’s rewarding to see that genetics research will improve the accuracy and effectiveness of everyday medicine. Genetic research has opened up the possibility of faster and more accurate diagnosis and improved prediction of a person’s risk of developing a disease, as well as new treatments.

“However, there continues to be a pressing need for further research in areas such as gene therapy if these possibilities are to be realised. The need for further research underscores the importance of projects like the UK Biobank, which will catalogue the genetic, lifestyle and medical details of 500,000 participants.

“Researchers will be able to use this resource, and other studies, to uncover the genetic and environmental factors that lead to common conditions including cancer, heart disease, diabetes and Alzheimer’s disease, improving our understanding of the biology of these diseases and helping to develop improved diagnostic tools and safer, more effective treatments.”

Delyth Morgan, Chief Executive of Breakthrough Breast Cancer, said:

“Breakthrough is encouraged to see moves towards guarding against the potential for unfair discrimination and the creation of a ‘genetic underclass’. Women with a high breast cancer risk face a huge dilemma when deciding whether or not to be genetically tested. Our concern has always been that the added risk of exclusion from insurance would act as a strong deterrent to those who would benefit most.

“An estimated 5-10 % of women diagnosed with breast cancer each year have inherited the disease. Women at high risk have told us they have waited months for access to a family history clinic and up to two years for the results of a genetic test. We welcome the much-needed investments announced today to improve current genetic services in particular those within primary care.”

(1) The Human Genetics Commission is the UK Government’s advisory body on how new developments in human genetics will impact on people and on health care. (2) The Association of Medical Research Charities was established to further medical research in the United Kingdom generally, and in particular, increase the effectiveness of those charities undertaking medical research. (3) The Genetic Interest Group is a national alliance representing individuals and families affected by genetic disorders. (4) The Wellcome Trust is an independent research-funding charity that aims to improve human and animal health. (5) The MRC Human Genetics Unit is one of the largest MRC establishments in the UK. Its role is to advance the understanding of genetic factors implicated in human diseases and abnormal development. (6) The UK Biobank is the world’s biggest study of the role of nature and nurture in health and disease. (7) Breakthrough Breast Cancer is a charity committed to fighting breast cancer through research and awareness.