HL Deb 17 March 2005 vol 670 cc54-6WS
The Parliamentary Under-Secretary of State, Department of Health (Lord Warner)

My right honourable friend the Secretary of State for Health has made the following Written Ministerial Statement.

We are publishing today a new concordat and moratorium on genetics and insurance, which has been agreed between the Government and the Association of British Insurers (ABI). Copies have been placed in the Library. An electronic version has been placed on the Department of Health website at www.dh.gov.uk/ publications.

The new framework, which comes into force today, provides that the use of genetic information by insurance companies will be transparent, fair, and subject to independent oversight. It will help to reassure patients who may be deterred from taking predictive genetic tests for fear of the insurance consequences, and is flexible enough to respond to fast-moving technological and clinical developments in genetic testing.

The concordat balances the interest of patients and insurers. Those seeking insurance should not withhold information relevant to underwriting, and insurers should not treat people who have an adverse predictive genetic test result less favourably than others, except as provided for in the concordat.

The moratorium on the use by insurers of predictive genetic test results is extended for an extra five years until 1 November 2011. No one will be required to disclose the results of a predictive genetic test unless it has been approved by the Genetics and Insurance Committee (GAIC) and is for insurance of more than £500,000 for life insurance or £300,000 for other health insurance. This means that for the vast majority of insurance policies genetic tests results will not be used at all.

The concordat clarifies the broad types of insurance for which predictive genetic test results may be relevant. They are life, critical illness, and income protection insurance policies. Insurers will not use the results from predictive genetic tests for travel insurance, private medical insurance, or any other one-off or annual policy, or for long-term-care insurance.

The concordat also clarifies the circumstances when patients need not disclose genetic information, and how information will be handled by insurers. For example, genetic tests taken as part of a research study will not need to be disclosed to insurers. This is good news for United Kingdom clinical researchers, as it specifically rules out the use by insurers of the results of genetic tests taken during participation in clinical trials, removing a potential obstacle to patient recruitment in the development of diagnostic tests, treatments, and medicines.

These commitments are backed up by independent oversight of the use of predictive genetic tests by GAIC together with the ABI's code of practice and an impartial complaint and arbitration process.

The Government would like to thank the Human Genetics Commission, GAIC, patient groups including Breakthrough Breast Cancer, CancerBACUP and the Alzheimer's Society, and other research groups and individuals who have provided valuable contributions that have helped shape this new concordat and moratorium on genetics and insurance.

The new framework means that insurance will continue to be available for people who take predictive genetic tests. They will need to disclose only the adverse results of predictive genetic tests for a limited range of unusually high-value insurance polices—and then only if the predictive genetic test has been approved by the GAIC. It is the Government's view that this approach is good news for individuals and insurance companies as it will ensure that the rights, safety and well-being of those taking predictive genetic tests are protected whilst also ensuring a viable and fair insurance market.