Seanad Éireann debate -
Tuesday, 11 Jul 1995

Vol. 144 No. 8

Adjournment Matters. - Discrimination on Disability.

Dr. Henry

I thank the Minister, Deputy Taylor, for attending this evening. Ireland is a leading country in the human genome project, that is, the identification of all human genes. Some of the most important recent developments in medicine have been in the field of genetics. These advances have been exciting but they have also been a cause of anxiety for some people.

The diagnosis of diseases due to faulty genes is far ahead of the possible cure or amelioration of many of these conditions. Some people now know of their genetic predisposition to a disease but not whether this disease will become manifest. There are many diseases where lifestyle and environmental factors can be as important as genetic predisposition. However, there are social and psychological factors which are influenced by the knowledge of the faulty genes.

It is enough for a healthy person to find the presence of an abnormal gene without the additional worry that this could be held against him in employment or any other area. The Department of Equality and Law Reform is bringing forward additional legislation regarding equality in employment on foot of a European directive and I hope this legislation will go further than the directive. I recently pointed out during the discussion of another Bill that the Minister has often gone further than EU directives in the legislation he presents. I hope this legislation will outlaw discrimination on the basis that an apparently healthy person had an abnormal gene.

This type of legislation is under consideration or has been enacted in other European countries. The US Equal Employment Opportunities Commission has barred gene discrimination under the Americans with Disability Act earlier this year. This is the first federal document to declare it illegal for an employer to discriminate against a worker on his or her genetic make-up.

Such legislation is needed here. While it is important from a civil rights aspect it is also important from a medical perspective. In the past none of us knew our genetic make-up. It is now known that certain conditions — some serious, some less so — run in certain families. In some circumstances the disease may develop inevitably but in others this is not the case. It may be possible for a person with a genetic tendency to a certain disease to so modify their behaviour that the disease will not develop.

If a person has a genetic predisposition towards hypercholesteralaemia, that is having high fat levels which can cause heart disease, it could be valuable for them to know this early in their lives so that they might find a suitable diet, exercise more and refrain from smoking. Indeed, they could do all the things we should all do.

Many patients would be reluctant to undergo such tests if they felt the results could be used against them later. Medical and lifestyle changes could prevent or delay the onset of cardiac diseases in the cases I have mentioned. There are other conditions where a change in lifestyle or a modification of environment could be important.

The US Equal Employment Opportunities Commission acted because some employers in the US were insisting on employees taking genetic tests if it came to their notice that a member of the family had an hereditary condition. I read of one serious case where an employer found out the mother of a girl he employed had Huntingdon's chorea. This is a serious neurological condition with mental and physical problems, which, however, do not usually develop until a person reaches the fourth decade of life.

The girl was forced by her employer on threat of dismissal to have a gene test to see if she carried the gene. Given this is an inevitable condition this was extremely serious. About 50 per cent of the children of sufferers of Huntingdon's chorea will develop it. Tragically, when this girl took the test she found she had the gene and would develop the condition. This knowledge destroyed her life totally. She might not have known her fate for another 20 years but she was forced into this knowledge due to having to take the test.

Fortunately, with most conditions a genetic defect need only predispose a person to having a disease. These conditions apply to almost everyone: almost all of us could say we have an abnormal gene, but it may never affect us in later life. We could all be classified as "genetically disabled" but we should not be classified as "disabled" until a particular condition develops.

There are serious social and ethical issues involved in mapping genes and using information so acquired. Genetic records should be kept private and should not be used for employment, insurance or any other discrimination, but should only be used in a manner helpful to the individual involved or their family.

We must go forward on this topic to avoid people feeling genetically stigmatised. The science of eugenics has a dubious and unpleasant background. The real science of genetics should have a bright and hopeful future for mankind.

Minister for Equality and Law Reform (Mr. Taylor)

I thank Senator Henry for her informative contribution on this topic. The question of equality, as regards equal status and employment equality, is central to my brief as Minister for Equality and Law Reform and discrimination on the grounds of disability is a significant part of that brief.

Since taking office, I have established the Commission on the Status of People with Disabilities. The commission, which was set up in 1993, is expected to report back to me at the end of this year. The task of the commission is to advise the Government on the practical measures necessary to ensure that people with a disability can exercise their rights to participate to the fullest extent of their potential in economic, social and cultural life.

In addition, I am committed also to the preparation of legislation which will prohibit discrimination on a wide range of grounds, including age, disability, gender, family and marital status, race, religion and membership of the travelling community. I hope to bring this legislation before the Oireachtas in the autumn session.

In its deliberations, the commission has been engaged in the most extensive consultation exercise since the foundation of the State with people with disabilities, their parents and carers and other interested parties. It has also established a number of working groups to examine specific areas affecting the lives of people with disabilities, including the issues of health and of training and employment. On receipt of the report, I will examine its recommendations with a view to considering what measures may be required by me and my colleagues in Government to improve the employment prospects and general welfare of people with disabilities.

I listened carefully to the Senator's concern that employers may be discriminating or could discriminate unfairly against people who are healthy but whose genetic background may dispose them to particular illnesses. I understand genetic testing is a relatively new field of study and there are practical questions as to the relevance, accuracy and reliability of these tests. There are also ethical questions with regard to personal privacy and medical practice that fall to be resolved as the field of knowledge develops and expands. These issues have fuelled medical debate in recent times and will undoubtedly continue to do so for some time to come.

In some countries where employment practices are well developed, such as the United States, Australia and New Zealand, there is protection not alone for people whose disability is manifest but also for those whose disability is not manifest. For example, there is protection for healthy people whose prospect of future illness can be identified in advance and for people to whom a disability may be imputed either on rational grounds or for reasons of prejudice. Listening to the Senator's contribution and other evidence, there may be a deal of sense in considering the adoption of a fairly broad ranging approach to discrimination on grounds of disability.

In employment, there are legitimate and unfair grounds on which an employer may discriminate as between employees and prospective employees. Obviously, an employer must be free to recruit and retain in his or her organisation people who are fully competent, available and capable of doing the work for which they are paid. I expect most employers take health into account in assessing the availability and capability of employees and prospective employees. For example, an employee with a serious recurring illness that necessitates frequent sick absence is clearly not fully available for work.

At the same time, it is essential that whatever the testing methods, they are reasonable and proportionate for an employer to apply in the particular case. What is reasonable and proportionate will depend largely on the job in question. Medical considerations that might legitimately rule out a person for employment as an airline pilot might be totally inappropriate if applied in another context.

The legislation for employment equality, which I will bring forward in the autumn, will deal with some of the issues raised in the debate. Discrimination is a complex area and I intend that the legislation will be even-handed in its approach. It will give much needed means of redress to people who have suffered unfair discrimination in relation to employment. At the same time, the legislation will also have to take into account circumstances where there are good work related reasons for distinguishing on health grounds between prospective applicants for employment, training or promotion. Achieving the right balance between the protection of the rights of the individual and the legitimate concerns of the community is the challenge faced by the Oireachtas in this sphere.

The Seanad adjourned at 9.25 p.m. until 10.30 a.m. on Wednesday, 12 July 1995.