The Importance of Knowing

by Laura Heinichen

The study of genes has come a long way over time -- "Genetics, once an arcane branch of biology, has become frontpage news" (Berg and Singer, 1). It all began when an ancient man manipulated genetics to reproduce corn and animals. And then Dr. Garrod observed that diseases appeared in related parents, and that occasional diseases were the result of an absence of enzymes. As technology grew, so too did these genetic findings. Following the creation of the atomic bomb during WWII, these same PhD's began the creation of a "chromosome machine" -- a machine with the ability to sort chromosomes, thus sort DNA. Finally, in 1972, the bioengineering industry was born. It was then that scientists formulated the idea to insert foreign DNA into a bacteria, that would in turn synthesize a protein product available for commercial purposes.

It wasn't long before scientists were synthesizing, manipulating, altering, reintroducing, recombining, and cloning genes. The next project was obvious -- creating a genetic map of the entire human genome, the Human Genome Project. The information provided by the sequencing of the entire human genome is huge, and can be utilized in various ways. "New insights into genome organization, new genes, new mechanisms for the regulation of gene expression, and new evolutionary important processes are certain to be discovered" (Berg and Singer, 242). One specific benefit will be the ability to identify individuals who are at risk for certain problems such as cancer, heart disease, alcoholism, and obesity. Knowing such risks, individuals might be able to undertake life style changes or undergo medical treatment to minimize their problems. However, the availability of this information itself creates some dilemmas. . . Dilemmas involving social, legal and ethical ramifications.

When information is made accessible to individuals, there are two possible outcomes: the results obtained can be beneficial to the individual by creating the opportunity to perform therapeutic or preventative intervention; or, these results could usher-in multiple apprehensions, pre-conceived notions about the future, unnecessary abortions, denial of medical insurance, false hope and false fears, and could create tension among family members or break them apart. In the long run, it is the lives of humans that we are trying to save and perpetuate, since, in my opinion, nothing on earth is more sacred than a living human being. If we have the chance, the ability to intervene, prevent or help prepare individuals who are at risk for certain problems such as cancer, heart disease, alcoholism, and obesity, shouldn't we do so? If we have the capability to save a life, or make it better, doesn't that win? Doesn't that have greater precedence over all the potential downfalls? In my opinion, it does. If there is even the potential of making a life better, of even creating a life, that person should be given the chance to do so. Life, even life improvement, conquers over all the potential negatives.

This proficiency in identifying individuals who are at risk for certain problems such as cancer, heart disease, alcoholism, and obesity does not only affect those individuals and their families, but has great ramifications for physicians too. When it comes to these tests, physicians are faced with many problems and questions: should they be required to perform these tests? Could they get sued if they do not? As stated earlier, I fully support the concept of performing these tests -- after all, life is the most sacred thing. Isn't that what physicians are for -- to preserve life, to help prevent diseases, to provide treatment?

In becoming a physician, you are pledging to do all you can for your patients, and if that means preparing them for the future with information, treatments or prevention methods, then that is what you are pledging to do. A doctor follows this code of ethics where life is the number one priority, and they should do everything in their power to prevent diseases from destroying it. This is what every patient expects of their physician when they put their life into the physician's hands -- they assume that the doctor is doing everything necessary, including all the potential tests, to check for any possible diseases that could damage that which is most sacred to them. If a test is available, they would expect it to be performed, and if it is not, they have the right to sue that physician for malpractice. The physician has the tools available, and the patient is expecting those tools to be used. When the physician has the ability and does not act upon it for whatever reason, he is setting himself up for a malpractice suit. Nothing overrides the importance of life. Nothing.

In continuation, this physician should be required by his malpractice insurer to perform the tests. If the physician is required by his malpractice insurer to perform the tests, it is almost a guarantee that the tests will actually be executed. The patient will know that their physician will do everything in his power, including all the potential tests, to preserve the patient's life. In sum, the life of the patient is the most sanctified thing, and everything should be done to preserve it -- that's what we expect of out physicians. If they do not perform the tests, the patient should sue for malpractice. After all, physicians follow a code of ethics to do everything in their power for the patient, and by not performing the tests, they are breaking that code which we expect them to live by.

Since we have determined that the tests should be performed unconditionally, the question then arises as to who will pay for the tests. The answer is simple -- the insurance companies. Insurance companies are what make catastrophes easier and affordable, by spreading around the cost of health care. They are also a business out to make money, a profit. The insurance companies also realize that prevention is cheaper than curing a disease. Therefore, if there are tests with the ability to identify individuals who are at risk for certain problems, in turn creating the opportunity to perform therapeutic or preventative intervention, this prevention will save the insurance company money. It would be cheaper for the insurance company to pay for a test that would identify individuals who are at risk for certain problems such heart disease, rather than paying for heart surgery later in life. Providing for testing is beneficial for the business, not to mention the fact that if insurance companies pay for testing, more people will be able to undergo the tests.

The problem is though, should these insurance companies have access to these results? No. Genetic confidentiality should be fervently maintained. These companies have pledged to aid its members by making catastrophes affordable. There's nothing affordable when the company drops you after learning of the test results. First of all, the insurance company has to realize that the profit earned by avoiding cures and surgeries through genetic testing far outweighs the profit lost when testing results are unfavorable. Secondly, they have pledged to support these individuals who are trying to protect their lives. In doing so, they undertake of genetic testing to see if they are at risk for certain diseases, saving the insurance company money; however, is it ethical to drop them if the results are negative? Certainly not. How can that which helps them, which saves the insurance company money, also condemn them?

In sum, I feel that genetic testing should be mandatory -- that physicians should be required to perform all tests, that they should be sued for malpractice if they don't, that the insurance companies should pay for this testing, but should not have access to the results. My views have been supported herein, and I'll defend them to any criticisms. No one can convince me that there is an alternative to life -- a life with as little complications as possible.