Cystic fibrosis is a terrible disease that claims the lives of innocent children every day. It causes them to suffer through a shortened lifespan and puts a burden on their parents. Fortunately, cystic fibrosis is a disease that can be diagnosed while the fetus is still in the womb. This amazing technological advance in medicine, however, gives rise to many moral and ethical debates. Is fetal diagnosis an ethical practice? If so, how much medical intervention is considered acceptable? In my opinion, fetuses diagnosed with a condition before birth deserve ethical consideration, but all decisive rights remain with the parents. This paper examines cystic fibrosis as a disease, a topic of controversy, and an ethical debate.
Cystic fibrosis is a heredity condition passed from parents to their offspring. It is an autosomal recessive disorder, meaning the offspring must receive one allele from each parent in order to express the illness. Advances in medical technology have allowed scientists to further determine that the disorder is a result of a mutation on chromosome 7 in humans. There are approximately 600 separate mutations that can cause cystic fibrosis, but over fifty percent of confirmed cases are due to a mutation known as delta-F508. This mutation causes an abnormal protein to be produced in the body. This protein blocks chlorine molecules from crossing any membranes, which also affects sodium levels. The result is the production of extremely sticky, thick mucus throughout the body. Thicker mucus affects the lungs and pancreas most, but also damages the liver and intestines. All of these damaged organs then contribute to other health complications. The condition is usually diagnosed before the age of three, and is most often diagnosable at birth. This disease claimed its victims at very young ages until progress was made in treating the disease. Now patients suffering from cystic fibrosis can expect to live about thirty years.
The delta-F508 mutation, and others causing cystic fibrosis, reveal themselves in their victims through an identifiable set of symptoms. A few of those symptoms are apparent from birth. First, doctors can diagnose a child at birth by conducting a sweat test. Children who suffer from CF (due to sodium inefficiencies) will have extra salty sweat that can be identified by a simple kiss on the forehead. The test is actually conducted on the forearm, and two positive tests are required for a confirmed diagnosis. Another symptom present at birth is the buildup of meconium in the infant's intestines. This is normally passed from the body within the first couple days of birth, but infants suffering from cystic fibrosis get blocked systems and cannot pass the material. This can cause them to have a lot of gas and abdominal cramping. Further, because CF patients do not absorb nutrients from their intestines properly, many patients may develop deficiencies in vitamins A, D, E, and K. It also causes their stool to be oily and bulky-looking. They also have difficulties gaining and retaining weight because of all the complications in their digestive systems.
As terrible as all these effects sound, the most common and dangerous problems occur in the lungs. John Travis, in his article, had this to say about these specific complications with cystic fibrosis patients: “While cystic fibrosis can damage many organs, its hallmark in people is lung problems. Most scientists believe that mutant versions of cffr encode defective proteins that cannot properly transport chloride ions into lung cells, thus treating a buildup of salt outside them. This abnormally salty environment disables a natural antibiotic, leading to bacterial infections that trigger the production of mucus in the airways. Ultimately, lung damage from the infections and the accumulation of mucus make breathing impossible. This perspective on cystic fibrosis has spurred gene therapists to focus on fixing lung cells by replacing mutant cffr genes with functional versions” (Travis, 1997). According to this explanation, cystic fibrosis exhibits some asthma-like symptoms. Thicker mucus causes debris to get trapped in the lungs, unable to be ejected through coughing. This leads to frequent respiratory infections characterized by chronic inflammation, which can lead to permanent lung damage and scarring. It is because of the painful, terrible nature of this disease that such controversies as to its diagnosis and implications have arisen.
The most heated debate related to cystic fibrosis is the conflict over genetic testing. J. Craig Cohen said, “Cystic fibrosis is a preventable disease” (Travis, 1997). It is this idea that leads some people to feel that genetic testing is a scientific breakthrough that has the ability to find mutated genes in healthy individuals, allow for and improve prenatal testing procedures, and eventually find a cure for these genetic diseases. Others, however, feel that testing is intrusive, dangerous, and inaccurate. Today, there are 700 genetic disorders that can be identified through genetic testing. Of those, 344 tests are clinically available and 211 conditions require prenatal tests specifically. These statistics show how common genetic testing is in today's society, but how necessary are they? Well, in the case of cystic fibrosis, twelve million Americans alone carry the recessive allele for the disease. This means that, if two carriers were to marry and have children, they would have a twenty-five percent chance of having a child that is affected. Are three million children at risk for a horrible disease enough to make it necessary?
Once you pass the hurdle of genetic testing, the debate gets even more heated. For those who have extremely limited options, gene modification is a growing option. This new and developing process aims to prevent genetic diseases like cystic fibrosis by correcting the defect in the gene itself. If this idea can be perfected, many of today's incurable diseases would be eliminated. There are two commonly used scenarios that demonstrate the usefulness of gene modification. First, if two people both carry two copies of the recessive allele, meaning they have the same mutation at the same locus, they risk passing the disease to their offspring. In fact, all of their children will most likely have the disorder. The second scenario is when both parents only carry one allele for a disease. In this instance, if we assume Mendelian inheritance, half of their children could be carriers and another twenty-five percent would actually be afflicted. When presented with these odds, few people can have a bright outlook. For them, gene modification is not an intrusive, unethical practice. Instead, it is a glimmer of hope for having a happy, healthy family. Gene modification can cure many diseases, prevent those diseases, and give people another option for planning their lives.
Finally, the ethical debate ends when all other options have been exhausted. When genetic testing reveals a defect and gene modification cannot fix the issue, many people begin to consider whether or not abortion would be an acceptable option. They believe that the life I have described thus far is not worth living, or that the costs to the family are too high. So, the ultimate ethical debate centers around one question: is it morally acceptable to end the life of another based on quality of life? I think that, in some cases, it can be. As I said at the beginning, I feel that fetuses suffering from a medical condition deserve moral consideration, but not their own ethical rights. The terrible life that cystic fibrosis would bring to a child should be prevented. Since a fetus is not aware of the situation or able to make any conscious decisions, this burden lies on the potential parents. They must evaluate their own lives to determine whether they would be able and willing to care for a child in a sensitive condition. If so, that is wonderful. If not, however, the child is forced to live a painful life while growing up in a tense home atmosphere. So many more negative results would occur because of that decision than would be present if the pregnancy had been terminated. In this case, going through with a live birth would be more unethical than abortion.
Unfortunately, my personal decision to abort a child due to genetic illness would conflict with the ethical principle of nonmalfeasance, which says to do no harm. By prematurely ending the life of a potentially productive individual, I am causing physical and emotional harm. The fetus is destroyed in a gruesome, painful process that ends their physical existence and could potentially harm the mother. Additionally, after such a procedure, there is emotional distress and trauma that the mother experiences. Therefore, I would also be harming myself. However, my decision to terminate a pregnancy would be supported by the principles of beneficence, justice, and autonomy. Beneficence is the idea that the benefits of a treatment should outweigh its burdens. If I choose to keep the baby, my burdens outweigh the benefits. I would experience financial strain, physical exhaustion, and mental and emotional fatigue. I would be forced to watch the child I love suffer until they finally die. The only benefit is that I have a child to love and care for. Further, the benefit of being able to live does not outweigh the child's burden of pain, suffering, and a decreased lifespan. Since the burdens outweigh the benefits for us both, the decision to abort can be considered ethical. A second principle, justice, says that limited resources should be equally distributed. Caring for a severely ill child requires a dramatic increase in resources. More money, patience, and attention are needed to provide effective care, which may unfairly draw on the attention and supplies that other family members need and deserve. This could create more tension and anger within the family unit. Finally, the most important principle to be considered is autonomy. This idea says that all mentally competent adults should be able to make their own decisions when dealing with their own bodies. This is a vital right that the mother can never lose. Since the child is not mentally competent while in the womb, the final decision is left to the mother, who is mentally capable. Since the fetus survives off of her body, she can decide whether to abort the child or support it through a sick, difficult life. Therefore, the concepts of nonmalfeasance, beneficence, and autonomy all support the right of the mother to make all ethical decisions.
In the end, this ethical debate can never really be solved. All people deserve the opportunity for a happy life. Abortion revokes this right from unborn fetuses. However, a woman has a right to make decisions that profoundly affect her body and lifestyle. There is no doubt that illnesses like cystic fibrosis are devastating and tragic. The debate lies in whether or not that is enough of a reason to prematurely end a potentially productive, valuable, and happy life. Therefore, cystic fibrosis is indeed a childhood killer. It is both a disease and a justification for murder. The real question is why?