Information obtained from genetic testing potentially can serve the individual well by opening the door to therapeutic or preventive intervention. However, this information may also have such unwelcome effects as increased anxiety, altered family relationships, stigmatization, and discrimination on the basis of genotype. Concerns about stigmatization and discrimination are particularly troubling, especially regarding the procurement of employment and health care coverage. Introducing considerations about genetic risks into the current health system could result in more refined risk rating by insurers and greater difficulty in finding affordable health care coverage for large numbers of people. Access to health care might be denied or preexisting conditions excluded from coverage. Individuals could be obliged to provide genetic information as a condition of obtaining health care coverage, and information on genetic health risks may also include children, parents, siblings, and other relatives.
It is for this reason that I believe that genetic testing should not be mandatory. Physicians should not be required to perform the tests, nor should parents be compelled to ask for them. Parents should be informed of the possibility of genetic disorders, and told that there are tests that can detect the probability that the child could develop one or more of these diseases. However, they should also be advised of the problems that may arise from the results of such a test. In the end, it should be the parents' decision, not that of the doctor or the lawmakers.
The knowledge that a child is at risk of suffering from a particular genetic disorder enables the parents to educate themselves about the disease and seek the correct course of action for dealing with the problem. In many cases, through life style changes, surgical operations, drug therapy, and other types of medical procedures, it is possible to provide the child with a `normal' existence. Since the parents know in advance that there is a possibility that a problem may arise, they can prepare themselves mentally and emotionally to deal with such an occurrence, whereas uninformed parents may be too stunned by the sudden discovery to be able to make any rational decisions concerning the well-being of the child.
On the other hand, there are some parents who, after learning of their child's possible affliction, would choose to give up the child, most likely through adoption. There are many reasons why the parents might make this decision. Perhaps they do not feel as though they could handle the pressures of having a child with some kind of genetic disorder, or are unwilling to make the sacrifices necessary to ensure that the child is as healthy as possible. Or maybe the parents just do not have the resources to finance such an expensive venture.
This is where the insurance companies come in. I believe that everyone should be eligible for health care coverage, be it through Medicare, Medicaid, or some privately run insurance company or HMO. All insurance providers should be required to cover genetic testing, just as it would cover other more widely accepted forms of testing, such as blood testing, CAT scans, or bone marrow tests. These providers should subsidize and make available to all subscribers the opportunity to obtain genetic counseling, testing, and treatment within a program of primary, preventive, and specialty health care services for individuals with genetic disorders and those at risk of genetic disease.
Although this would result in the elevation of insurance premiums, I would hope that a majority of people would be willing to sacrifice for the security that comes with the knowledge that one will be insured no matter what illnesses he or she may have. Many people would probably complain that they should not be paying to take care of sick individuals when it is `not their problem.' These individuals most likely do not realize, however, that it is their problem because they or a close friend or relative could be in a similar position one day.
Perhaps it would be possible for the government to subsidize treatments to make them more affordable for those on a fixed income, much in the way that the government has set up federal student loans and scholarships. Just as financial aid for education is distributed according to determined financial need, funds to cover medical treatments could be disbursed to individuals who exhibit a definite need. This could help alleviate some of the burden on the insurance companies, although the taxpayer would still be affected somehow.
In keeping with my position, the issue of whether or not the individual should be forced to tell the insurance provider the results of the genetic tests is almost a moot point. If everybody were automatically covered by some kind of insurance, they would not have to fear the repercussions of the results, because the insurance company would have no recourse. They could not refuse treatment of genetic `preexisting' conditions or just drop coverage altogether because such activity would be banned. The afflicted individual, or one with a genetically-determined probability of suffering from some kind of disorder, would not have to worry about the security of their coverage.
The moral and ethical issues surrounding this problem are very diverse, but all are quite defendable, depending on the individual's point of view. The most difficult part of trying to resolve this dilemma is how to reconcile financial interests with the humane and charitable concerns. The position that I advocate is not the most economical, but it is the most humanitarian, and according to my own morals and ethics, that should be the overriding factor in such decisions.