The general public are ‘kept in the dark’ about the innovations that are happening in science, and the authorities decide want they want us to know; though newspapers, televised news programs or documentaries. The average person would not read the publications that count, nor would they be aware of the implications that can arise from genetic results being available to all.
The insurance companies ran into a wall of criticism as it unveiled new guidelines on genetic testing which confirmed that the results of tests would be taken into account for many policies. The information about genetic illnesses will play an important role in deciding whether insurers provide cover and what price they will charge for insurance premiums. The Association of British Insurers had confirmed it would recommend that insurers should not ask people to take genetic tests. However, if people voluntarily take a test then the companies should be able to ask for the results. (The Observer 23 February ’97)
The issue of insurance companies being allowed to examine the genetic test results, before they offer insurance cover has been criticised, for various reasons. The average man having to undergo a genetic test before being granted life assurance, pensions, medical insurance or a mortgage as been described as an outrage. The National Consumer Council said that they were concerned that insurance companies would create an ‘ever increasing ghetto of uninsurable people’. Susan Bull assistant editor of the Bulletin of Medical Ethics states that the results of genetic testing being disclosed, will deter people from having one. Patients may fail to take preventive action that will reduce their risk of succumbing to a genetic illness. She, also mentioned that someone might have a genetic predisposition, but it does not mean that they, will get a condition. (The Guardian, 19th February ’97)
John Gillott, supported this proposal and suggested that insurance companies, should have access to genetic test results, in order to stop ‘deathbed’ applicants from applying. The results of genetic test will enable the insurance companies, to properly assess the risks of insuring a people with a genetic predisposition and charge them accordingly.
These developments are not new, during the 1980s the insurance companies faced criticism over, life assurance companies refusing to give cover for people who had admitted to being tested for the AIDS virus. The insurance industry decided to continue to demand the disclosure of results, where a test had been taken, despite the controversy surrounding this issue.
Employers issuing genetic tests and using the results to decide, whether or not a person should be employed, will become widespread unless it is controlled according to the report, entitled Genetic Testing by Employers. This has already come into force in America and has been severely criticised. At the present moment there is only one British employer using these methods, that is HM Forces. The results can disclose to an employer if a potential employee has a predisposition to a genetic illness. The TUC have stressed their concerns regarding this matter, and have said that some companies may have several motives for conducting tests, one of which can reduce future sick pay costs. (The Observer 27th July 1997)
The issue of genetic testing, is in danger of, not just affecting our jobs, homes or futures but our present lives too. One of the few tests generally available at present is for Huntingdon’s Disease, which attacks the nervous system and leads to death with fifteen years. The concept of discovering that your grandmother has this disease, the suspicion that your mother may also have the disease, although she does not really want it confirmed. If you have the test and the result is positive, then there is a good chance that your mother may also have the said disease. The psychological and social ramifications of this event happening are quite extensive. Couples can also be tested to show whether they will have a child with cystic fibrosis, the benefits of this is that the couple have the choice of having children and taking the gamble, aborting the foetus or not having children. These choices can effect people for a long period. The notion that genetic test results be available to all, will possibly lead to stigma and societal judgements, because the parents were irresponsible in keeping the child that they knew to have this disease.
Jacqui Wise (1997) believed that the results of genetic testing can bring heartache as well as hope. She explained this statement by using the analogy of a person who has these genetic tests and discovered that there was a chance in that person developing a mental disorder in later life, how would they cope? This question along with many others will be raised should the results of genetic tests become available to all. Dr Richard Nicholson, editor of the Bulletin of Medical Ethics states that once a genetic discovery has been made, it cannot be unmade and there is always the risk that the information can be misused. He also believed that it is inevitable that once genetic information is available, some people will want to use it for eugenic purposes. (The Guardian 4th March 1998)
The issue of genetic test results becoming available to all, may be a futile argument, because in some countries, genetic tests can be bought from private laboratories. Genzyme an American company sells these tests to the public, while another company in America called Zeneca Diagnostics has launched a test for the predisposition to bowel cancer. These companies believe that the public wants to know if they have a genetic disorder without the involvement of their doctor. The prospect of tests sold direct to the public by private laboratories, had sent alarm bells ringing through Parliament, Medical Ethics specialists and even the European Commission.
In 1997 the was no UK Law regulating genetic test providers, however, the Health Advisory Committee, released a draft code of practice to be used by companies offering genetic test direct to the public. The existence of these companies suggests that we will all be able to buy an insight in to our future health. (The Troubled Helix, by Marteau & Richards)
The questions of whom should have genetic test results? In addition, Should genetic testing become mandatory, are questions that we possibly will not have to consider. The reported rapid progression in genetic developments could eliminate these questions, because if we are to believe the daily newspapers, the issue of receiving genetic test results from a person in the medical profession is a something of the past. A Social Service Correspondent David Brindle wrote in the Guardian in 1998 a distressing article in which he states that Ministers had put their faith in voluntary regulation of the growing industry of ‘mail order’ genetic testing. The Department of Health invited companies to register their do-it-yourself tests, before marketing them, and to give undertaking on quality, confidentiality and customer counselling. What he failed to report was that there is a small clique of private laboratories already offering this service for a nominal sum. The implications of this development are huge, the consequence of test results being placed in the ‘wrong hands’ is a frightening concept and could destroy many peoples lives.
In answer to the question: Who should have the results of genetic tests?
The inspiration of genetic testing was to enable the medical profession to be able to discover genetic diseases. Once these diseases are found, they are able to assist high-risk families and inform them of the possible dangers of their genetic disorder. The results of these tests can help the patient decide what to do and in taking the appropriate action. If the results reveal a condition that can be rectified, by doing these tests they can eliminate a disease that may have a long-term effect. If the genetic disorder can not be eliminated then the medical profession has the experience to illuminate the options. An individual’s need to find out if they have a predisposition to a genetic disorder, should be placed firmly in the individuals own hands.
Genetic testing being used in order to help in the commercial market, for example life assurance has been described as being morally and ethically wrong and can result in extensive dilemmas. The notion of genetic results being placed on a genetic database in which the relevant bodies can obtain the results of a genetic test is an infringement of personal privacy. In addition, with the recent developments in which the public, can purchase a test from private medical companies, the benefits of this are that the individual has the option of keeping their results private. The implications of this are that private companies also have the right to purchase these tests, to which an individual result are open to abuse.
The results of genetic tests, are sometimes sensitive, and may need the relevant counselling. Should genetic test results ‘fall’ into the inappropriate quarters the implications may be difficult to resolve.
In answer to the question: Should genetic testing be made mandatory?
The results of these tests have to be stored somewhere. The idea of a genetic database, could enable medical staff to retrieve results quickly. The notion of a genetic database is open to abuse and it being used in totally inappropriate ways. Demanding mandatory testing is taking the individuals rights away. In the instance of general genetic disorders or diagnosing a genetic disorder of a particular race or age, the medical authorities are in danger of presenting a concept that is open to discrimination.
The above question does not have a right or wrong answer, but the answer can be said to be based upon moral ethics, the ethic code, that is used depends upon, who wants the results? For what reason? And the developments that will progress, when the results are revealed.
