Ethical Problems with Genetic Testing

Elizabeth A. Lipp

           In 2001 The Human Genome Project was completed giving us the make up of the entire human genome. Science can now tell what color your eyes are, what gender you are, and what diseases you have just by extracting one strand of DNA. The question I propose to you now is; do you really want to know? Is it a good thing to know that you will get a disease that will eat away your mind, and cripple you till you wither away at the early age of 43 (Huntington Disease)? Genetic testing is the new wave of the future. Geneticists can now tell possible carriers of the gene for Huntington’s disease their true fate, not just give them odds. Now that we can tell people what genes they will or do have, do we allow people to selectively decide when and whatever they want to know? Do we test the unborn, and if so, then can the parents abort if they are unhappy with the results? How far do we let things go? Is genetic testing really a good ethical procedure? But what if it could also prevent and help cure disease? There are many issues involved with genetic testing. I will discuss the reasons the medical professions are for and against genetic testing also the concerns bioethicists have in that testing could be used for inappropriate reasons.

           Interest in genetics has grown universally, and with good reason. For me it is very personal. As a biomedical engineering major at Colorado State University, I could one day be behind genetic developments and I will want to know the ethical concerns with it. As for other students, it is just as important they keep up to date with what is going on because they could very well be faced with the decision of whether or not to take a genetic test. It could be for an incurable, deadly disease such as Huntington’s or it could be for a pretty easily curable disease like colon cancer. Genetic testing could very likely become our new glass ball to tell us our fate.

           Part of the medical profession believes that “genetic tests can help screen for and diagnose a suspected disease, as well as give clues about prognosis” (Hensrud 194). Doctors practice medicine to alleviate pain and suffering from their patients; this belief has always been held in medicine. One of the techniques for them to do so is to diagnose a problem in order to fix it the best they can. Genetic testing is one tool that can be used to diagnosing certain problems.

Genetic testing cannot discover all diseases but it has the potential to change the way the medical enterprise works. The healthcare industry could start predicting and preventing many diseases instead of being concerned mostly with the end stage of disease (Genes and Ethics 784). In other words, genetic testing could help by foreseeing the fate of people making it possible for doctors to prevent some diseases instead of waiting until patients are sick to try and treat them.

Genetic testing is a new technology that is not necessarily perfect, but not everything is perfect in medicine. We do call it practicing medicine for a reason. People who are for the use of genetic testing because of the medical advantages are optimistic that the new advancement can help patients. Any new advancement that gives doctors a new tool can always be used for ill of for good. A lot of the encouragement comes from the doctors and other medical professionals that want to help patients in any way they can. They want to be able to diagnose diseases quicker like Dr. Donald D. Hensrud of the Mayo Clinic did. A patient of his was shown to have a mutation in the gene that causes colon cancer; the early detection then helped him to determine a better, quicker treatment plan (Hensrud 194).

There are also disadvantages in genetic testing seen by the medical community. Huntington disease is one of the few diseases that is the “one gene, one disease” model. It has one gene that codes for it. So, if you have that one gene, you will get it. Most other diseases are not that simple, there are more factors to them than a single gene. Therefore if you get tested and told you have the gene for a certain disease it is more of an “at risk” label, bringing uncertainty into the picture. Having certain genes can be one risk factor, but there are environmental factors that contribute to the prognosis of diseases also (Vastag 721). Researchers generally agree that genetic testing is not the most accurate way to diagnose most diseases.

Another reason there are medical professionals with doubts about the use of genetic testing is they don’t believe in giving false hope to patients. It is not really a comfort to know that you will get an incurable disease. It won’t help you live a normal life with less pain and suffering. Geneticists can now tell people with the Huntington’s Disease gene that, yes, they will become sick and die young and painfully, but they can’t tell them when. That doesn’t make a geneticist’s job any easier. You might then question if it is right to test our kids to see if they will get the hereditary disease also, and die an early death 40 years from now. If you do, you are taking their choice of knowing or not knowing away from them. They will have to live with what we find out for the rest of their lives.  Dr. Wylie Burke is quoted saying “the mainstream opinion is against the use of this test in asymptomatic people” (722).

Caution is a big part of the approach of the medical disadvantages. There is a lot to be said about being cautious. Medical professionals don’t want to move too fast and catch the public off guard with information they are not ready for (Parker 1685).

           Accurate or not, testing genes creates an ethical issue for more than just the medical professionals. When genes get involved there is always the issue of bioethics and how far we should be able to take science before we are “messing with nature.” In From Chance to Choice: Genetics and Justice, Allen Buchanan et al., came up with different scenarios in which genetic testing could be used the wrong way. An example of this is allowing parents to test their unborn fetuses. When they are found to be “undesirable,” for a disease or any other such characteristic the parents then decide to abort the child (Johnson 13). With that we begin selective breeding. That is something that many in society see as playing God.

           “Playing God” is a phrase that has been used to refer to the concern the people are using genetics as an inappropriate way to change nature scientifically (Chapman 73). The bioethics committee, a government committee, does a lot of the debate on this; most of the members are bioethicists, not doctors or scientists, yet they have put a lot of time and research into this topic. Bioethicists do not have the medical background that a doctor would, but they understand that doctors’ main objective is to help patients the best they can. The issue they are more concerned with is the other possible things people might use genetic testing for such as cloning for cults or advantages for jobseekers (Johnson 13).

           Another wrong action that could be caused by genetic testing is discrimination. Information discovered through genetic tests could be used against you in the work place and by insurance companies. If you are predetermined for a disease, nobody is going to want to hire you and invest their time and money into training you. In 1970, even before the widespread use of genetic testing, the U.S Air Force Academy refused to accept members who carried the gene for sickle cell anemia (Greengard 41). In addition, if insurance companies know you are going to get sick they are not likely to want to insure you.

           There are many reasons why genetic testing is good, bad, ethical, not ethical, however you want to put it. Genetic testing brings up different issues for different people depending on your background, and on your future. The medical community would like to be able to use genetic testing to be able to tell you your future risk for disease and possibly prevent future suffering. Some in the medical profession ask: should one be told they are going to get a disease that nobody can do anything about? Is genetic testing accurate enough for medicine to be using the new technology? Bioethicists fear that if genetic testing is allowed, it could lead to some ethical and moral issues. Is that something we should risk? Obviously, genetic testing has many complicated sides to it. 

 

Works Cited

 

Anonymous. "Genes and Ethics." British Medical Journal 325.7368 (2002): 784-784.

 

Chapman, Audrey R... "Genetic Engineering and Theology: Exploring the Interconnections." Theology Today 59.1 (2002): 71-86. 2/24/04. <http://rapid.library.../>.

 

Greengard, Samuel. "Genetic Testing." Workforce 76.7 (1997): 38-44. 3/22/03. <http://0-web4.epnet.com.catalog.library.colostate.edu/>.

 

Hensrud, Donald D. "Genetic Effects." Fortune 145.11 (2002): 194-194. 2/21/03. <http://0-search.epnet.com.catalog.library.colostate.edu/>.

 

Johnson, Dan. "Ethics in the Genetic Age." Futurist 34.6 (2000): 13-14.

 

Parker, Michael, Anneke Lucassen. "Working towards ethical management of genetic testing.." Lancet 360.9346 (2002): 1685-1685.

 

Vastag, Brian. "Experts Wrestle with Social, Ethical Implications of Human Genome Research." JAMA 285.6 (2001): 721-722. 3/15/2003. <http://0-jama.ama-assn.org.catalob.library.colostate.edu/>.