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Genome enquiry: The ethical dilemma

Vanitha Srinivasan

IT APPEARS for the first time in the history of human existence that scientists have found a way to beat astrologers and prophets in telling people exactly when their lives would fall apart. While new technologies in communication and information are evo lving at hurtling speeds, it is genome research which will impact the very being of humans as a species and evolution in future.

Genetic technology presents the scientists and policy-makers with immense possibilities of bestowing positive benefits to humanity as a whole. But it can unwittingly or by design unleash the evil forces too. The ethical dilemma between protecting individ ual privacy and making available the fruits of genetic research in terms of predicting, preventing and curing diseases has the battlelines drawn between various groups. Since the governments legitimised genetic enquiry by allocating resources, molecular biologists, clinicians, bioethicists and social scientists are busy marshalling their arguments in favour of or against.

Viewed in a business sense, for the pharmaceutical industry, the results of genome enquiry may translate into big money by the offer of services and products ranging from mass screening methods (predictive tests for common disease categories) to new drug s. Equally important, the genome enquiry is going to dramatically impact the commercial and ethical aspects of the business of health care, and medical and life insurance.

An important social issue concerns job discrimination at the point of recruitment. While it is understandable that the airline pilot be tested for colour blindness, many believe that discrimination on the basis of predictive tests, at this point of time, is unethical. This will also, it is feared, give rise to the employing industries shifting the blame on to the employees when polluting working conditions may actually be the cause of diseases.

The danger of over-dependence on predictive tests will be apparent when people will be discriminated not on the basis of their present health but statistical results. Increase in the discovery of undesirable genes through screening tests poses ethical di lemmas for the fear that the results may end up in data banks for use against individuals and groups, with employers in drug and insurance companies, police and social workers potentially threatening to reduce human life to a commodity.

The attitude of governments in granting approval for genetic tests being carried out for eventual disclosure to medical and life insurers bears testimony to this dilemma. In the US, where legislation is not federal, in 18 states, insurers cannot deny cov erage, cancel their policies or charge higher premia on the basis of genetic make-up. A law in Austria bars insurers and employers from obtaining the results of genetic tests. And in France, there is a five-year moratorium on the use of such tests.

Contrary to this general trend of being very circumspect about disclosing genetic test results, this year, Britain granted approval for such disclosure, that too only in the case of the fatal degenerative brain disorder known as the Huntington's disease, where the scientists believe there is a conclusive nexus between a single gene mutation and the onset of the disease. At present there are only seven other disorders of similar nature,involving 10 tests which could qualify for such treatment.

Of all the industries, insurance is the most worried as it is itching to get its hands on genetic information to reduce its risks or charge increased premia for those with adverse findings. After all, in this world of uncertainties, the whole idea of ins urance is based on pooling risks. The insurers expect to pay out less than they collect as premiums and for setting such premium as they evaluate risks, higher the risk of an individual or a group the greater the amount or even refusal of coverage.

Increasing knowledge of one's genetic make-up instils greater fears of fraud in the minds of insurance companies. For instance, if someone knows (after a test) that he is going to die within a few years, he could insure himself for a huge sum and then se ll the policy to a third party.

In effect, insurance becomes a bargain for those with a greater risk and a burden for those with a lesser risk. If people with no known genetic disability tend to avoid insurance, and the others go for large covers, the insurance market will shrink.

It is feared that on the one hand the life insurance companies may use genetic information obtained from testing to practise unfair discrimination against their clients but, equally, the latter may withhold crucial information from the former. It has bee n suggested that a risk factor be incorporated in the risk premium evaluation techniques gradually, as the results of genome research unfold for each genetic condition. These have to be updated as new knowledge is revealed. Whether or not it really satis fies the customer and the insurer, it is sure to keep busy the actuary.

In countries where welfare benefits to their citizens include universal medical care, genetic testing and screening may appear less problematical than the resultant financial burden to their governments.

While a better understanding of the genetic basis of a disease is set to revolutionise medicine in the coming years, time alone will tell how the society as a whole will resolve the issues of privacy, discrimination, private health care and provision of insurance.