According to the British Medical Association (1998), few potential uses of genetic information have caused as much controversy as those in the social sphere and in particular, its use by insurance companies. For this reason, it is often assumed that any non-medical use of genetic information is always unacceptable, inequitable, and discriminatory. The simple belief that all medical uses of information are good and all non-medical uses are bad is a fallacy (BSM 1998). In reality, information may be appropriately used or misused in either sphere, and all potential uses of genetic information need to be objectively assessed and monitored (Appleyard 1999).
Nevertheless, an example of misuse can be clearly seen when in February 1997, the Association of British Insurers (ABI) decided that anyone applying for life insurance must reveal the results of any genetic test that he or she had taken. Many of the insurance companies proposed to ignore the results unless the application was for insurance cover over ?100,000, linked to a new mortgage for example (ABI 1997). This may well have repercussions for a large family who need larger accommodation, who would therefore, would be likely to be more than ?100,000. Instantly this family?s standard of living has been reduced, due to having to live in accommodation unsuitable to the families needs. Just one of the reasons to put people off having a genetic test that could benefit them. Appleyard (1999) explains further that in the wider implications, the genetic diagnosis of future conditions may lead to a nightmare for insurance companies and their customers. If DNA tests for a wide range of diseases are demanded by insurance companies, then inevitably, a large number of people are going to find themselves uninsurable or with cripplingly high premiums (Appleyard 1999)
This policy by the IBA was due to run until March 1999, and is presently still under review with the government. It was originally designed to gauge the demand for cover among those with hereditary illnesses. Nevertheless, according to Burley (1998) critic?s fear that it is the first step towards creating an insurance underclass, with people unable to get cover because of their genetic makeup. The IBA launched a web-site in October 1999 to help elevate the public concern surrounding this area. Mary Francis, the Association?s Director General, said: “this web-site is the latest example of the insurance industry?s wish to be open and objective about the way it uses genetic test results. This is understandably an area of considerable public interest, and insurance companies have based their approach on independent scientific advice? (IBA 1999).
With the present knowledge of genetics, scientists, politicians, media and society as a whole face certain dilemmas. By cloning and sequencing human genes, it is possible to make medical products or to cure by gene therapy. By cloning and sequencing the very same genes, it is possible to advise potential carriers of defective genes. By cloning and sequencing the very same genes, it is possible to discriminate, stigmatise, and make those who have the bad luck to carry defective genes poorer. It is not possible to do scientific research, which will only lead to benefits, (Appleyard, 1999)
The moral obligation is to inform of possible ways that scientific knowledge can be used or misused. Decisions over how scientific knowledge is used are independent of knowledge and should be taken independently, (Russo & Cove 1995). The BMA (1998) also suggest that health professional, scientists, policy-makers and the media all have a responsibility to ensure that debate about important ethical issues is not clouded by misplaced optimism or anxiety.
Genetics offers great hope to many thousands of people but also has the potential to cause great harm. Ensuring, as far a possible, that the benefits are realised and the harms are avoided is not solely the task of the health professionals These are matters for society as a whole and all citizens should be positively encouraged to participate in the debate. Without the support of the public, firmly based on open dialogue, public scrutiny, and effective regulation, many of the potential benefits arising from our understanding of genetics will be lost.
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Bibliography
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