NHS urged to prepare for advances in genomic medicine

In collaboration with the Press Association

A House of Lords committee has urged the government and the NHS to take steps to ensure that the potential medical benefits of advances in genomic science are realised and to regulate the private gene testing industry more tightly.

The latest report from the House of Lords Science and Technology Committee, published on July 7th, focuses on genomic medicine and the changes that advances in this field are likely to mean for the NHS.

Peers have urged the government to produce a new White Paper on the subject, since the potential impact of this form of medicine has changed significantly since the last White Paper was published in 2003.

Since then, the implications of genomic medicine have moved on from rare single-gene disorders to complex diseases such as cancer, diabetes and heart disease.

Peers therefore want the government to consider how the Department of Health will help turn laboratory advances into clinical practice; create a roadmap for how developments will be incorporated into the NHS; and draw up proposals for a programme of long-term funding to support these measures.

Lord Patel, the chairman of the inquiry, said that genomic medicine will have a "huge impact" on healthcare over the next few years and that it presents both challenges and opportunities.

"The government must now take the lead on this issue and produce a new White Paper on genomic medicine," he insisted. "It has been six years since the last one and in this area times move on very quickly.

"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."

The Lords committee expressed particular concern about the growth of the private gene testing - 'Direct to Consumer Test' (DCT) - industry.

A number of genetic tests are already used within the NHS to help diagnose and treat certain illnesses and private companies are now selling some of these for consumers to use at home.

The committee expressed concerns over the potential for consumers to receive test results over the internet without proper medical advice or counselling.

Some of these private DCT companies operate overseas and are not regulated by the Advertising Standards Agency, meaning that the agency has no powers to prevent them from making false claims.

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

The committee has recommended a voluntary code of practice for DCT providers, requiring them to publish details of the effectiveness of the tests they offer and to give appropriate pre- and post-test counselling so that users understand how to interpret their results.

All tests should also be subject to pre-market review to ensure they are effective before being made available for use, either on the NHS or directly by consumers, peers said.

Henry Scowcroft, science information manager at Cancer Research UK, said: "It's very exciting to see workable and affordable approaches to genetic testing on the horizon for many cancers. We expect such technology to develop very quickly in the next few years - so it's important that as a society we start thinking about how best to apply these advances.

"The Lords report is a comprehensive and welcome review of the issues and we hope the government will build its recommendations into future NHS strategy and practice.

"As far as direct-to-consumer genetic testing goes, we support the recommendations in the report, especially with regards transparency and the need for counselling. Although this field is developing rapidly, we do not advise people worried about their cancer risk to use these tests at the current time without proper medical support and advice."

In addition, the committee has called for the government and the Association of British Insurers to work together to draw up a new agreement on the impact of genetic test results on insurance beyond the current moratorium, which ends in 2014.