July 6, 2009

experts react to House of Lords report on Genomic Medicine

The report, from the House of Lords Science and Technology Select Committee, considers the future of genomic medicine and its potential impacts on healthcare.

Sarah Norcross, Director of the UK genetics/assisted conception charity the Progress Educational Trust, said:

“The Progress Educational Trust welcomes this report’s acknowledgement that public engagement around ethical, social and legal issues is crucial, in order to improve public understanding of common complex disorders and the interpretation of genetic tests.”

Dr Declan Mulkeen, Director of Research at the Medical Research Council, said:

“Genomic medicine will be an essential component of healthcare delivery. Delivering medicine stratified by genetic make-up requires continued support for research into the basis of disease, along with new business and regulatory models to allow partnerships with industry to deliver new ways of diagnosing and treating ill-health. We welcome this report as a valuable contribution to how we can work together to achieve this.”

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

“Genomic medicine provides tremendous potential for improved healthcare in the future. Indeed, it is already delivering better treatments for cancer. We must act now to prepare the health service and the public to gain maximum benefits from genomic medicine. This comprehensive report provides a much-needed blueprint for moving forward. Government, the NHS, researchers, charities and industry need to work together to achieve this vision.”

Prof Rory Collins, Co-Director of Oxford University’s Clinical Trial Service Unit and Professor of Medicine & Epidemiology, said:

“The EU Clinical Trials Directive is a serious obstacle to important medical research and, as a consequence, it is harming patients in the UK and elsewhere in Europe. I strongly endorse the recommendation that the Government should revise the UK implementation of the EU Clinical Trials Directive and should work closely with the European Commission to revise the Directive in order to make it less obstructive to research. In making these changes, as is also recommended by the Lords, it is essential that the Government involve researchers who have experience in conducting successful clinical trials that have improved the efficacy and safety of patient care.”

Prof Sir John Bell FRS PMedSci, President of the Academy of Medical Sciences, said:

“Genomics will have a major impact on healthcare, but a steady hand and a clear vision is required to use this research to deliver clinically useful and cost effective advances in healthcare.

“Innovative solutions will be required to overcome the obstacles of applying genetic testing more widely across the NHS. Current laboratory structures are already fragmented and there is a risk that introduction of new technologies will lead to further duplication.”

In a statement, the British Society of Human Genetics, said:

“The BSHG welcomes the House of Lords extremely timely and comprehensive review of genomic medicine. In particular, the society hopes that the Government will consider and adopt the following recommendations:

-,More research into the clinical validity and utility of genomic tests, and measures to make the usefulness of ‘direct-to-consumer’ tests transparent, giving more power to the consumer to make informed choices about genomic tests.
-,The recognition that genetic counselling is an essential component of genomic service delivery and requires strengthening
-, a new White paper on genomic medicine, to ensure that the momentum from the 2003 Genetics White Paper is not lost, and that maximum health benefits from genomic science are achieved within the NHS.
-,Centralisation of NHS lab services for molecular pathology, to include genetic testing. The BSHG believes that the internationally-recognised experience of the specialised genetic centres can greatly strengthen provision of genomic lab services as they develop.
-,The establishment of an Institute of Biomedical Informatics, which will be essential to the exploitation of genomic and other data-dense technologies in the NHS.”

The British Society for Human Genetics (BSHG) is an independent body representing UK human genetics professionals. Its membership includes scientists, clinicians and genetic counsellors.