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UK Committee Urges NHS to Incorporate Genomic Medicine

NEW YORK (GenomeWeb News) – The UK should begin taking steps to prepare for the "potential impact of genomic medicine" on health care, and begin taking steps to ensure that new genomic technologies and knowledge are integrated into the national health system, according to a government committee that has completed a review of the field.

The House of Lords Science and Technology Committee in a statement accompanying a new report today said that genome-based medicine "has implications for patient care across the [National Health Service] and a range of common, genetically complex diseases such as diabetes, heart disease and cancer."

The group has made wide-ranging recommendations for NHS and the government in the 127-page report, and it has advised drafting a white paper that will address several specific issues.

"Genomic medicine will clearly have a huge impact on health provision and the NHS in particular over the next few years," Lord Kamlesh Patel, who chaired the inquiry, said in a statement.

The white paper should include details about how the Department of Health will help to translate genomic medicine into clinical practice, including planning changes that will "bring genetic testing into mainstream clinical practice," the committee said.

"It is time for a comprehensive statement from the Government on how genomic medicine will
be incorporated into the NHS, including details of the extra training
doctors and nurses will need in this area," Patel continued.

A roadmap plan of measures should be developed for how these tests could be incorporated into NHS, and there should be proposals for a program "of long-term funding to support these measures," according to the committee.

Because there currently are "several barriers" that keep some new genomic tests from being translated from invention into use in the NHS, the committee has recommended that a Health Technology Assessment program fund research into the use of such tests within NHS, and that the Office for Strategic Coordination of Health Research draft a strategic vision on how they should be incorporated.

The report also advised that the government push to reclassify genetic tests within European law from low risk to medium risk in order to make sure they are subjected to pre-market review to prove their effectiveness before they are available for use either by the NHS or for sale directly to consumers. The committee said it looked specifically at direct-to-consumer genetic tests, and it expressed "concerns" about consumers using internet-base genetic testing services without "proper medical advice to put those results into context."

To address that, the committee advised that the Human Genetics Commission develop "a voluntary code of practice" for providers of DTC genomic tests. That code should require that these companies publish details of the effectiveness of their tests, and it should include guidelines for counseling before consumers take the tests and after they receive their results.

"Without proper qualified interpretation, results of genetic and genomic tests could cause people to worry unnecessarily and place new demands on NHS services," said Patel. "It is time firms offering these tests were required to provide counseling and guidance on interpreting the raw results they provide."

The committee also said that it found that genetic tests are "placing increasing demands on doctors and nurses," who are not well equipped to use them effectively. It advised that "training in using and interpreting genetic tests should be an integral part of training for healthcare workers."

Because the committee said that it has found "significant inequalities" for genetic services for studies and management of rare and common diseases, it has advised recruiting bioinformaticians to establish a new institute of medical bioinformatics.

The committee also said it found that there are "privacy concerns about the retention and use of genetic data," and concerns about how such data could be used. As a result, it has recommended the creation of a set of clear guidelines for the research community for handling such data, as well as a new agreement on the use of genetic tests with the Association of British Insurers that would extend beyond a current agreement, which expires in 2014.