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PHG Foundation responds to call for evidence on genomic medicine from House of Lords Committee

22 April 2008   |   By Dr Alison Stewart   |   News story

In 1995 the House of Commons Select Committee on Science and Technology published Human Genetics: the Science and its Consequences, a report which showed for the first that UK politicians were becoming aware of new developments in genetics and their potential impact on health care. Publication of the report was followed, during the second half of the 1990s, by the establishment of the first Government advisory committees devoted to aspects of genetics policy.

More than a decade later, the Human Genome Project is complete and the Commons Science and Technology Committee is defunct, but its counterpart in the House of Lords has appointed a sub-committee to carry out an inquiry into Genomic Medicine, aiming to “provide an assessment of genome technologies and their actual and potential impact on clinical practice in the post-genome era”. The initial consultation stage of the inquiry, which has just closed, asked for evidence on issues ranging from the state of the science to how effectively it is being translated into new clinical tests and interventions, whether the existing regulatory framework is appropriate, and whether ethical, legal and social considerations are being adequately addressed.

In its response to the call for evidence, the PHG Foundation emphasises that, although genomic science is in a robust state, progress is much slower in evaluating the clinical and public health relevance of these scientific advances. There is insufficient recognition of, or resources for, the final stage of translation, which is not a research activity but a process of change management that includes knowledge integration and synthesis, knowledge brokering, stakeholder dialogue and consensus-building, clinical and public policy development, service review and reorganisation, education and training. These activities form the core of the work of public health genomics.

The PHG Foundation calls for a regulatory and policy regime that avoids ‘genetic exceptionalism’, instead treating DNA as one among several types of biomarker that may be used in the diagnosis of disease or estimation of disease risk. It points out that, in the context of common disease, the concept of ‘individualised medicine’ may be misleading. Advances in genomics are unlikely to lead to an ability to provide an individual with a precise, personalised prediction of drug response or disease risk. Rather, genomics will refine our ability to place that person within a band or segment of the population characterised by a particular array of diagnostic features or a particular average disease risk. This process does not differ in principle from the current practice of population stratification based on phenotypic features such as blood pressure or cholesterol levels.

Finally, the Foundation predicts that new service models and professional roles will need to be defined as genetics becomes integrated into mainstream medical practice, and routine genetic aspects of care are devolved to appropriately trained health professionals in other specialties.

The next phase of the House of Lords’ inquiry will be a series of public meetings and oral evidence sessions. The Committee expects to publish its final report, with the accompanying evidence, towards the end of 2008.

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