The Dilemmas of Genetic Testing
Historically, it was impossible to determine whether a person was a carrier of a genetic disease or whether a fetus was affected by a genetic disease. Now both of these things and much more can be determined through genetic testing. Although there are obvious advantages to acquiring this kind of information, there are also potential ethical problems. For example, if two married people are both found to be carriers of cystic fibrosis, each child born to them will have a 25-percent chance of having cystic fibrosis. Using this information, they could choose not to have any children, or, under an oppressive government desiring to improve the genetics of the population, they could be forcibly sterilized. Alternatively, they could choose to have each child tested prenatally and abort any child that tests positive for cystic fibrosis. Ethical dilemmas similar to these are expected to become increasingly common as scientists develop tests for more genetic diseases.
Another dilemma arises in the case of diseases such as Huntington’s disease (Huntington’s chorea), which is caused by a single dominant gene and is always lethal but which does not generally cause physical symptoms until middle age or later. A parent with such a disease has a 50-percent chance of passing it on to each child. Now that people can be tested, it is possible for a child to know whether he or she has inherited the deadly gene. If a person tests positive for the disease, he or she can then choose to remain childless or opt for prenatal testing.
Tests for deadly, untreatable genetic diseases in offspring have an even darker side. If the test is negative, the person may be greatly relieved; if it is positive, however, doctors can offer no hope. Is it right to let someone know that they will die sometime around middle age or shortly thereafter if there is nothing the medical community can do to help them? The psychological trauma associated with such disclosures can be severe. Additionally, who should receive information about the test, especially if it shows positive for the disease? If the information is kept confidential, a person with the disease could buy large amounts of life insurance, to the financial advantage of beneficiaries, at the same price as an unaffected person. On the other hand, if health and life insurance companies were allowed to know the results of such tests, they might use the information to refuse insurance coverage of any kind. Finally, none of the genetic tests is 100-percent accurate. There will be occasional false positives and false negatives. With so much at stake, how can doctors and genetic counselors help patients understand the uncertainties?
How Should Genetic Testing Information Be Used?
Scientists are now able to test for more than just specific, prominent genetic defects. Genetic tests are now available for determining potential risks for such things as cancer, alcoholism, Alzheimer’s disease, and obesity. A positive result for the alcoholism gene does not mean that a person is doomed to be an alcoholic, but rather that he or she has a genetic tendency toward behavior patterns that lead to alcoholism or other addictions. Knowing this, a person can then seek counseling, as needed, to prevent alcoholism and make lifestyle decisions to help prevent alcohol abuse.
Unfortunately, a positive test for genes that predispose people to diseases such as cancer
may be more ominous. It is believed that people showing a predisposition can largely prevent the eventual development of cancer with aggressive early screening (for example, breast exams and colonoscopies) and lifestyle changes. Some preemptive strategies, however, have come under fire. For example, some women at risk for breast cancer have chosen prophylactic mastectomies. In some cases, however, cancer still develops after a mastectomy, and some studies have shown lumpectomy and other less radical treatments to be as effective as mastectomy.
Another concern centers on who should have access to the test results. Should employers be allowed to require genetic testing as a screening tool for hiring decisions? Should insurance companies have access to the records when making policy decisions? These are especially disturbing questions considering the fact that a test for one of the breast cancer genes, for example, only predicts a significantly higher probability of developing breast cancer than is typical for the general population. Making such testing information available to employers and insurance companies would open the door to discrimination based on the probability that a prospective employee or client will become a future financial burden. A number of states have banned insurance companies from using genetic testing data for this very reason.
Impact and Applications
The long track record and accuracy of some tests, such as the tests for cystic fibrosis and Tay-Sachs disease, has led to the suggestion that they could be used to screen the general population. Although this would seem to provide positive benefits to the population at large, there is a concern about the cost of testing on such a broad scale. Would the costs of testing outweigh the benefits? What other medical needs might not receive funding if such a program were started? The medical community will have to consider the options carefully before more widespread testing takes place.
As more genetic tests become available, it will eventually be possible to develop a fairly comprehensive genetic profile for each person. Such profiles could be stored on portable media and be used by individuals, in consultation with their personal physicians, to make lifestyle decisions that would counteract the effects of some of the defects in their genetic profiles. The information could also be used to determine a couple’s genetic compatibility before they get married. When a woman becomes pregnant, a prenatal genetic profile of the fetus could be produced; if it does not match certain minimum standards, the fetus could be aborted. The same genetic profile could be used to shape the child’s life and help determine the child’s profession. Although such comprehensive testing is now prohibitively expensive, the costs should drop as the tests are perfected and made more widely available.
Access to genetic profiles by employers, insurance companies, advertisers, and law enforcement agencies could result in considerable economic savings to society, allowing many decisions to be made with greater accuracy, but at what other costs? How should the information be used? How should access be limited? How much privacy should individuals have with regard to their own genetic profiles? As genetic testing becomes more widespread, these questions will need to be answered. Ultimately, the relationship between the good of society and the rights of the individual will need to be redefined.
Key Terms
dominant trait
:
a genetically determined trait that is expressed when a person receives the gene for that trait from either or both parents
recessive trait
:
a genetically determined trait that is expressed only if a person receives the gene for the trait from both parents
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