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15 Mar 2006 : Column 447WH—continued
Genetic Discrimination
11 am
Miss Anne Begg (Aberdeen, South) (Lab): I am delighted to be here this morning, Mr. Jones. On Second Reading of the Disability Discrimination Bill on 23 March 2005, I said that the Government would at some time in the future have to consider passing legislation making it illegal to discriminate on the grounds of genetics. Although I congratulate them on outlawing most areas of discrimination faced by disabled people, there is still a large hole in the process of ensuring that disabled people have their full civil rights. We must make sure that they do not suffer disproportionately from genetic discrimination in their employment opportunities or in access to services such as insurance.
I see the issue as one of equality and civil rights. Unfortunately, not everyone does, and I was reminded of that when preparing for this debate. When we were fighting for full civil rights for disabled people, it was difficult to get a relevant Minister to answer because the issue was invariably seen as one of health. One of the first problems the disabled movement had in fighting for civil rights was to get disability away from the Department of Health so that we could begin to challenge the medical model of disability and make the Government realise that it was our civil rights we were fighting for, not just access to health treatment and social care.
When I was granted this debate, I suppose it should not really have come as a surprise that my request was passed to the Department of Health, despite the fact that the Table Office suggested that I should add "in employment" to the title, so that it would be clear that it concerned genetic testing and discrimination in employment, not just genetics, which obviously is a health issue. I had hoped that a Minister from the Department for Work and Pensions would be asked to reply, or the Minister from the Department of Trade and Industry who is responsible for workers' rights. I am glad that, not I, but the system in this place persuaded the relevant Minister to respond today. I suspect that the Under-Secretary of State for Trade and Industry, my hon. Friend the Member for Sheffield, Heeley (Meg Munn) has drawn the short straw, but I am glad to see her. Her responsibilities include equality, and I believe that this is an equality issue.
The subject of genetic discrimination first came to my attention when I realised that those with diagnosed genetic conditions were receiving unfair treatment when applying for insurance. The insurance companies assumed that someone who had a genetic condition would automatically have a shorter life and should, therefore, pay higher premiums for any kind of life cover. That was also true for getting travel insurance, and several people contacted me, concerned either that it was impossible to get travel insurance for someone with a disability or that the premiums were so high that travel was almost impossible.
The assumptions often made by insurance companies regarding people with genetic conditions are that their lives will be shorter and that the quality of their lives will be less. That may be true of some conditions. For instance, if someone has been tested for Huntington's
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disease, there will be a direct correlation between their having the defective gene and the development of the disease later in life. However, it is impossible to predict when that might be or the severity with which the disease will initially hit, so there is a question of time scales. The situation with regard to the Huntington's gene is not necessarily the case for all genetic conditions. Indeed, a genetic disposition for a particular condition such as cancer or heart disease does not necessarily mean that an individual will develop the condition. A predisposition is purely that: a predisposition, not necessarily a matter of fact.
I know that insurance companies work on risk factors when they are working out the premiums payable, whether for life insurance or travel insurance, so they have to build in those risk factors and have access to all relevant information when making their decisions. I was very pleased when the Association of British Insurers announced in 2001 that it was to adopt a five-year moratorium on the use of genetic test results by insurers. At that time, I was about to apply for an Adjournment debate on the subject, but when the moratorium came along I decided to see how it worked, so I did not. If the moratorium did not work, I always intended to call for legislation to outlaw the practice of genetic discrimination.
I was particularly pleased to learn that from yesterday—I did not know this when I applied for the debate—a concordat has been agreed between the insurance industry and the Government, providing that insurers' use of genetic information should be transparent, fair and subject to independent oversight, and that the voluntary moratorium on insurers' use of predictive genetic tests should be extended until 1 November 2011. It has also been agreed that the concordat will be reviewed in 2008.
I know that not everyone is happy with everything the insurance industry has done because there are exemptions, such as Huntington's disease, but at least the system is much fairer. I certainly do not have any anecdotal evidence that people with genetic conditions feel they have been unfairly treated by the insurance industry. I believe that a model exists in that the insurance industry has shown the way. It is possible to ensure that those with genetic conditions are not treated unfairly and that there are clear guidelines, particularly for the use of predictive genetic tests.
The basis of my argument is that I would like a similar understanding to be reached with employers in the United Kingdom so that they do not demand the disclosure of genetic tests by their employees or, indeed, force employees or applicants for jobs to take the tests at all. If it is not possible to reach such an understanding and it becomes clear that genetic discrimination is taking place in the UK, I would look to the Government to legislate to outlaw that practice.
At this point, I should explain what is meant by predictive genetic tests and why it is important that people should be able to take such tests without the fear that it may lead to their being discriminated against. There are two main types of genetic tests. The first test a person's genetic make-up in order to identify, for example, where there may be faults in genes, or whether there are genes that would lead to a particular disease. The second type test for genetic damage that occurs during a person's lifetime.
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I speak as a supporter of genetic testing. I was born with a genetic condition and know the good that such tests can do. They play important roles in diagnosis and in treatment. For some, they may diagnose something for which there are presently no symptoms, but where it is useful to know that the genetic condition exists, as it may help determine lifestyle choices or help in early detection so that remedial treatment can prevent the symptoms from occurring. It is an important health issue.
It is for precisely those reasons that I want to ensure that people who may have genetic conditions feel safe in having a test, secure in the knowledge that the information gained will not be used by anyone to discriminate against them in future. Only with such assurances will people feel at ease in taking a test that may be very important to their future health. Evidence from elsewhere in the world, particularly the United States, which seems the worst example of a country in which people are forced to disclose information gained through genetic tests—suggests that without assurances that the information will not be used against them, people shy away from having the tests done at all. That has important consequences for their future health plans. I ask the Government to ensure that security measures are in place so that people can take genetic tests in the sure knowledge that the tests will be used for good of the individual and not to discriminate against them.
In years to come, genetic testing will become more sophisticated, and I want to ensure that such tests are a force for good, that they lead to better diagnoses and treatment and that they are not something to be feared. Of course, someone who has symptoms and a disability as a result of a genetic disease is likely to be covered by existing disability discrimination legislation. Someone who is asymptomatic is not covered, and nor is someone who might be affected by a condition later in life. Nor, indeed, is someone who has undergone a predictive genetic test, because it predicts only a propensity, and not that they will get the disease.
Many people fear predictive genetic tests. For someone who has a family history of breast cancer, it may be right to have a predictive test, but if there are no guidelines and no security against the test's being used to discriminate against the individual, they may not undertake it.
Predictive genetic tests are still crude, and their development has a long way to go, but even today, they are used to predict someone's propensity for developing a particular condition—perhaps cancer or heart disease. Although such tests may predict a propensity or susceptibility towards a condition, they predict neither that the person will definitely develop that condition, nor any time scales if they should. Therefore, if predictive genetic tests were used by insurance companies or employers to determine that an individual should be treated less favourably than someone else, that would be discrimination, and such practice should be outlawed. The use of those types of tests is causing most concern among organisations such as the Trades Union Congress and GeneWatch.
At a time when the Government are trying to encourage more disabled people into the work force, or to keep those who have developed a disability while in a
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job, it would be perverse if employers were able to use genetic tests as a recruitment tool to screen out people who were thought to be a greater risk.
The Human Genetics Commission has found no evidence that employers in the UK are systematically using genetic test results to recruit people, or using such tests as part of workplace health programmes—yet. However, the HGC has outlined the following general principles:
"that everyone is entitled to privacy and should not have to discuss information about personal genetic characteristics; that private genetic information should not be obtained or held without a person's consent; that private personal genetic information should be treated as confidential and not communicated to others without a person's consent; and that no one should be unfairly discriminated against on the basis of his or her genetic characteristics."
A number of countries, such as Austria, Denmark, France, the Netherlands and Norway, have some form of legislation that prohibits or limits employers' rights to ask for genetic information. Before it becomes a serious problem, it may be time for the UK Government to look to follow suit.
It is clear that genetic testing will increase. I want to ensure that those tests are used for good reasons and not to discriminate against an individual. We must ensure that they are used positively, whether it is to help in diagnosis and cure, to help people make more rational life choices, or to help employers ensure that they provide a safe working environment. They should not be used to help employers find an easy way to save money by not employing certain types of people because they may be a higher risk to the employer later in life or incur extra expenses for the employer.
It is time for the Government to consider the issue seriously to encourage employers to follow the lead given by the insurance companies and consider a moratorium on the use of the tests. Ultimately, however, there will probably come a time when the Government have to legislate to outlaw genetic discrimination in the UK.
11.15 am
The Parliamentary Under-Secretary of State for Trade and Industry (Meg Munn) : I congratulate my hon. Friend the Member for Aberdeen, South (Miss Begg) on securing the debate, and I pay tribute to the great deal of work that she has done on many occasions to raise disability and genetics issues. I am also grateful to her for the opportunity to debate this issue and to lay out the steps that the Government are taking.
My hon. Friend suggested that I had drawn the short straw, but I am happy to address the issue, because, as she said, my responsibilities cover women and equality. As I have said on many occasions, particularly during the passage of the Equality Bill, which is the legislation that will set up the new commission for equality and human rights, equality affects everybody and should be a concern of everybody. I am delighted that my hon. Friend has raised an issue that is not often referred to but about which we should nevertheless be concerned.
In the 2003 White Paper on genetics, we said that the Government "wholeheartedly endorses" the Human Genetics Commission's view that no one should be unfairly discriminated against on the basis of their
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genetic characteristics. The White Paper reminds us that universal health care, funded from taxation, which is the basis of the national health service, protects people against discrimination on the basis of genetic information. As genetic testing becomes more widely available, we are concerned to ensure that people should not and will not have to fear losing cover for health care.
All people with a genetic condition will be protected by the Disability Discrimination Act 2005, once their condition results in their becoming a disabled person within the meaning of that Act. My hon. Friend referred to that issue. However, we must not be complacent about the risk to people who, as a result of genetic testing, are shown to have an increased risk or, in limited cases, the certainty of developing a particular condition later in life.
The Government have done much to promote equality and tackle discrimination—a great deal more than any previous Government in our country. We have offered many people protection under the law for the first time, we are taking action to streamline and modernise the framework of discrimination law, and we are considering areas, such as the one under discussion, in which there are calls for specific new legal protection.
The Government have outlawed discrimination in the workplace on the grounds of sexual orientation and religion and belief, and we plan to do so later this year for age. In 2004, we significantly extended protection for disabled people against disability discrimination in recruitment and employment.
The Government have also brought in a groundbreaking duty on public authorities to promote race equality, eliminate racial discrimination and promote good relations between different racial groups. The legislation was introduced in 2002. As I am sure my hon. Friend knows, it is being followed by similar duties for disability and gender, which are due to come into force in December 2006 and April 2007 respectively. We legislated to provide legal recognition for same-sex partnerships for the first time through the Civil Partnership Act 2004.
The Equality Act 2006 has made significant steps, and it received Royal Assent on 16 February. It has three main purposes. First, it establishes the commission for equality and human rights, whose general duties, set out in statute, include encouraging the development of a society in which people's ability to achieve their potential is not limited by prejudice or discrimination. Secondly, it makes discrimination on the grounds of religion or belief unlawful in the provision of goods, facilities and services, and in the exercise of public functions. Thirdly, it creates a duty on public authorities to promote equality of opportunity between men and women, and to prohibit sex discrimination in the exercise of public functions. It also includes a power to make secondary legislation outlawing discrimination on the grounds of sexual orientation in the provision of goods, facilities and services. We are currently consulting on the detail of those measures. However, although there are many provisions relating to many areas of discrimination, we recognise that there is still more to do if we are to ensure that everyone's skills and
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talents can be fully realised and that people are not discriminated against for any reason, such as in the ways that my hon. Friend has described.
The Government are currently undertaking a discrimination law review that is working to develop a clearer and more streamlined framework of equality law. It will lead to a single equality Act later in this Parliament; that is a manifesto commitment. As part of the review, we are, of course, considering the calls made by various people from various organisations to extend discrimination law into new areas, including genetic predisposition. Genetic tests are becoming available that show that a person has an increased risk or a likelihood—or, in some cases, certainty—of developing a particular medical condition later in life. As my hon. Friend said, the concern is that the results of such tests might be used by employers to screen out applicants for jobs or promotion, or that insurance companies might screen out applicants for health cover or life insurance, or increase their premiums unreasonably.
I understand the concerns, but the technology is at an early stage, and it is important that nothing is done except on the basis of careful consideration of all the options. Discrimination law is one possibility, but there are clearly others, including legislation about the use of genetic tests, or statutory guidance. I intend to publish a Green Paper this summer, which will set out initial proposals and options for clarifying and streamlining discrimination law, and which will seek the views of all interested parties. We are committed to taking on board the views of all interested people, and we do not want to predict or pre-empt the findings of that consultation. I invite my hon. Friend and all who are concerned about this issue—I know that other Members involved in all-party groups have discussed it at length—to respond.
The work of the discrimination law review will run alongside the independent equalities review, which the Government established to investigate the causes of persistent discrimination and inequality in British society. The findings of the equalities review, which is due to report to the Prime Minister later in the year, will inform the work of the discrimination law review and the subsequent single equality Bill—and, indeed, the work of the new commission for equality and human rights. Let me reassure my hon. Friend that any proposals for reform to equality legislation will take full account both of the need to tackle inequality effectively and of the need to follow better regulation principles to minimise the burden on business and public services.
I will now address the specific concerns that my hon. Friend raised. First, on employment, the Government are not aware of there being any evidence at present of large-scale use of genetic testing by employers. However, we are committed to monitoring developments in genetic testing and have asked the Human Genetics Commission to assess the prevalence of genetic testing in the workplace and to report back later this spring. Given the weather, I am not sure whether we are quite into spring yet, or how soon it will come, but we will get that report in the near future. The HGC is well placed to undertake the work as it has an excellent understanding of the issues, is well respected and—importantly—will provide independent advice. In addition, the Information Commissioner's statutory employment code sets out that employers should inform the HGC of any proposals to use genetic testing for employment purposes. The Government have included
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questions on genetic testing in the 2005 British social attitudes survey to assess public opinion on the issue. The results will be available later this year.
The Government wish to ensure that once genetic testing has advanced to the stage where the use of test results by employers becomes a realistic proposition there are appropriate safeguards to prevent such information from being unfairly used. The Data Protection Act 1998 does not prevent the use of genetic testing, but as this is sensitive information about individuals' health, it is subject to restrictive rules. This demonstrates our commitment to monitoring the use of genetic testing in employment, with a view to ensuring that we will ensure safeguards are in place once genetic testing has reached an advanced stage. My hon. Friend referred to evidence that it is used much more widely in the United States, and she was concerned about whether it would become more of an issue in our country. We will have to keep a close eye on that. However, in the United States much health insurance and much provision of health services are linked to employment, which is one reason why I believe the issue is much greater there than it is likely to be in our country.
On insurance, as my hon. Friend said, we have a ban until November 2011 on the use by insurers of results from predictive genetic tests, unless a test has been approved by the Government's Genetics and Insurance Committee and relates to a policy over the substantial financial limits of £500,000 for life insurance, £300,000 for critical illness insurance, or £30,000 a year for income protection insurance. The insurance industry recently made it clear that it will not ask for approval to use the results from predictive genetic tests in determining insurance premiums before 2008. The Association of British Insurers wrote to the Department of Health on 15 February 2006 to say that insurers will not apply to use any predictive genetic test result in determining insurance premiums before 2008. The only test that they may currently use—they can do so until 2011—is for Huntington's disease for life insurance policies of more than £500,000. The current agreement with the insurance industry is flexible enough to respond to fast-moving technological and clinical developments in genetic testing. The Government have made it clear that any failure in respect of the agreement will lead to reconsideration of the need for statutory control. The Government stand by the commitment in the 2003 White Paper on genetics that any failure of the agreement will lead to reconsideration of the need for statutory control. If there is evidence of non-compliance with the moratorium by the insurance industry, the Government are prepared to enforce it through legislation. However, there is no such evidence at present.
In conclusion, I repeat that the Government are committed to a society in which no one is unfairly discriminated against on the basis of his or her genetic characteristics. The discrimination law review will look into calls for specific legal protections to be introduced in the area of genetic predisposition and other new areas. I cannot predict the outcome of the review, but I look forward to there being a full and productive examination of the issues.
11.28 am
Sitting suspended until half-past Two o'clock.
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