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HEALTH

Moratorium on Genetics and Insurance

The Secretary of State for Health (Dr. John Reid): 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
 
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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 only need to disclose 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 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.

HOME DEPARTMENT

Regulation of Fundraising Scheme

The Parliamentary Under-Secretary of State for the Home Department (Fiona Mactaggart): I am today publishing proposals for consultation on the principles on which the Government will base its assessment of the success of the self-regulation of voluntary sector fundraising.

Self-regulation of fundraising was a recommendation of the Prime Minister's strategy unit review of the charitable and wider not-for-profit sector, "Private Action, Public Benefit". The Government accept the strategy unit recommendation for self-regulation of fundraising, and have made provision in the Charities Bill for statutory regulation should self-regulation fail.

The draft Charities Bill was subject to pre-legislative scrutiny by a Joint Committee of both Houses of Parliament. The report of the Joint Committee on the draft Charities Bill endorsed the self-regulation of fundraising initiative, and recommended that the Government publish for consultation the criteria in accordance with which my right hon. Friend the Home Secretary will judge whether self-regulation is working effectively.

Proposals for a regulation of fundraising scheme have recently been published by the Institute of Fundraising. The main aim of the scheme is to maintain and build on the high levels of public trust and confidence in the voluntary sector's fundraising activities. The scheme will help the sector guard against future threats to the high levels of public confidence, and to provide the sector with a platform to defend itself against criticism.

The principles in accordance with which the Government propose that the success of the regulation of fundraising scheme should be assessed include measures of participation, comprising the number of participating organisations, the proportion of fundraised income covered by scheme membership, and the range of organisations in the scheme's membership; and other measures such as the effectiveness of complaints handling, public awareness of the scheme, the promotion of best practice, the scheme's independence, effective sanctions for non-compliance, the impact of the scheme on non-members and effective liaison with other regulators.

In the scheme's initial years the focus would be on measuring the take-up of the scheme within the sector as it develops its membership. It is envisaged that a formal
 
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assessment of the success of self-regulation would take place as part of the review of the impact of the Charities Bill which is due to take place within five years of enactment, and would report to Parliament.

I am very grateful to all those who have contributed to the development of the proposals for the self-regulation of fundraising. I would particularly like to thank the

Institute of Fundraising for taking the lead in developing the scheme, Rodney Buse for considering and consulting on an appropriate model for self-regulation to adopt, and the members of the Steering Committee for their work in taking the proposals forward.

Copies of the consultation paper have been placed in the Library and will also be available on the Home Office website at www.homeoffice.gov.uk/ comerace/active/charitylaw/index.html.

Details of the proposed self-regulation scheme are available on the Institute of Fundraising website at www.institute-of-fundraising.org.uk.

Comments are requested by 3 June 2005 and a further statement will be made in due course.

INTERNATIONAL DEVELOPMENT

St. Helena

The Parliamentary Under-Secretary of State for International Development (Mr. Gareth Thomas): On 19 April 2004, Official Report, column 1WS, I announced in a written statement that the Government would be undertaking feasibility and other investigatory work to determine how best to ensure access for St. Helena when St. Helena's passenger and supply ship, the RMS St. Helena, is withdrawn from scheduled service in or around 2010.

That work is now completed. We have looked not only at issues relating directly to access, but also at the potential of various access options to encourage the development of a vibrant island economy. This reflects our aim, shared with St. Helena, to achieve economic growth for the island.

We have decided that, subject to satisfactory contract bids and a rigorous environmental impact assessment, we will establish air access for St. Helena. This will entail providing an airport, with a 2,250m runway, near the eastern coast at Prosperous Bay plain. It will be capable of supporting the safe operation of long-haul jet aircraft, such as the Airbus A320 and Boeing 737–800. We will also provide advice to help establish regular air services; and we will support the St. Helena Government in taking advantage of the economic benefits that the new investment should bring to the island. All private sector investment interest will be considered on an equal footing.

For its part, amongst other supporting work, the St. Helena Government will review local legislation on inward investment, immigration and taxation. Our shared aim with St. Helena will be the creation of a policy environment, against a transformed background of good access, that will encourage sustainable economic development and progress for St. Helena and its community.
 
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