Gene Therapy

Scientists and medical doctors have created a new way to treat and cure diseases. Nothing like this has ever been attempted before. However, this revolutionary breakthrough in technology and science, called “Gene Therapy”, does come with a high price. Gene therapy could possibly cause more harm than good. It involves removing infected cells from a sick person, cleaning them up in a laboratory to remove the harmful cells, and reinserting them into the patient via a virus.

In theory, these “clean” cells will begin to change the other infected, cells. There is also the practice of inactivating a mutated gene or introducing a new gene altogether. (“What is Gene Therapy?”) Some patients have been cured of cancer and other deadly blood disorders by using gene therapy. It seems to give a “glimmer of hope” (Hogarth) to those suffering from cancer, cystic fibrosis, heart disease, Alzheimer’s, Macular Degeneration, Erectile Dysfunction, and blindness. What doctors and scientists cannot predict, however, are the long term effects of this very new practice.

The first and most important reason that gene therapy should not be used is the simple fact that there are no long term studies to show that this practice is safe. This procedure was first practiced successfully in September of 1990. This is still a very new concept only 19 years later. One current study is being conducted by St. Jude’s Children’s Research Hospital but will not have results until 2036. (“Long Term Follow Up of Patients Who Have Received Gene Therapy or Gene Marked Products”) This is a lengthy time period in which doctors will find out more information, but if it is deemed unsafe, these 100 trial participants may have long term effects which cannot be undone. Their genes will be changed, and if these genes are introduced into the reproductive cells, their future children also will have the new genes. (“Gene Therapy for Cancer: Questions and Answers”) In this way, the genes of another are also being manipulated whether they need to be or not. “Researchers must overcome many technical challenges before gene therapy will be a practical approach to treating disease.” (“How Does Gene Therapy Work?”) Children of people that have had these procedures done have not offered their consent to be treated, and that presents problems for the child and the parent, as well as for the medical community.

There are tests being performed that will check your unborn child’s DNA for genetic diseases so you can make an “informed choice” to have this procedure. This leads to some interesting conclusions for those with ethical, social or religious convictions. Ted Peters says “To my mind, the more important issue is the value that children will have when they are the result of engineering or selection”. This building of a “master race” (eugenics) would ensure that all people would be healthy. (Fleck) This is the same concept that Hitler and the Nazi’s had in the 1940’s. People that have disabilities and health problems would not be wanted in a society such as this. They could be considered a drain on the healthcare of the state and there could be a possibility of lack of care available for them. Individual needs might be considered “problematic”.

Special needs children might have no value in a society such as this. Who is to say what is valuable and what is not? Many people that have children with Down’s Syndrome wouldn’t change their child for anything in the world. They can show you things about yourself and about life that “healthy” children may not. Genetic tests are also very expensive but insurance most likely would pay for them. The problem then becomes that your medical history is available for insurance companies to view and the results may not be kept private. The company can then decide whether to carry your policy or not. The National Library of Medicine states that genetic discrimination occurs “when people are treated differently by their employer or insurance company” due to genetic testing. So your future coverage can be decided by a company and not by you and your doctor. The option you have is to pay for these tests out of pocket and that can be upwards of $3000. (“What is Genetic Discrimination?”) Then, after the testing, you are “counseled” as to your options, whether that is to try genetic therapy or to terminate your pregnancy.

One more enormous risk of this procedure would be the medical mistakes that could occur. “An error in technology or judgment could have far-reaching consequences”. (“Gene Therapy for Cancer: Questions and Answers”) In order to insert a “clean” gene back into a patient, it must have a “vector” which would be a virus. The patient must have low resistance. When you already have a low resistance, you can be susceptible to many other viruses as well. These “retroviruses” could damage good cells when they are reintroduced to the body via injection. “Viruses can infect more than one type of cell. Thus, when viral vectors are used to carry genes into the body, they might alter more than the intended cells. Also, whenever a gene is added to DNA, there is the danger that the new gene could be inserted in the wrong place, possibly causing cancer or other damage”. (Bellinar 539) There could be too much of a virus given and that can be spread to other people or to the environment. The virus could mutate into something else or could form its own strain which is resistant to antibiotics. This could be devastating for those around you, in the hospital and outside the hospital setting.

Eric Hogarth had a study he quoted from in his position paper that is very telling. In asking people from around the world about gene therapy, 42% of Americans said it was wrong no matter what. The Japanese respondents, however, said it was wrong 74% to 26%. In the random survey I completed, my results were right between these two countries. I found that when asking if the risk is worth the results, 55% of people said no, 35% said yes and there were 10% that weren’t sure. When asked if a loved one was dying of cancer, however, would they choose this procedure, 55% said yes, 30% said no and 15% needed more information. This was quite telling to me as the researcher. When you think of science and medicine in a very general term or as applying to the public, people didn’t seem to want to take risks. However, when it hits close to home, most said they would try it but for that reason only.

When I think of science, I can honestly say I don’t believe most of what we are being told. It seems that doctors and scientists always start out studies with such noble concepts. Who would dare say they didn’t want a cure for cancer to be found? But when we begin to learn of all of the ways scientists can manipulate our bodies (our genes) it begins to change the way we feel. Isolating and changing the breast cancer gene is amazing! But when you go down the slope to testing for it and then change your child’s genes, you begin to play God with another’s body. And then why stop with treating diseases? You could very soon begin to choose your child’s genes from both sets of parents. I might choose my green eyes and blonde hair from my genes, and height and weight plus athletic ability from my husband’s. In this way I have “created” my own genetically enhanced child. (Peters) This baby would be everything we wanted him/her to be with no surprises. It would be healthy and perfect! Isn’t that the dream of every parent?

There are also many positive results that do occur when trying to manipulate genes. These procedures can help in many ways and many people do opt to try them. There are ways to cure certain kinds of cancers which is a wonderful concept. How many people today are alive because of gene therapy? We will never know, but they would be the first to tell us how much this procedure has changed them. Their families and loved ones would surely say they agreed with the choices that were made. Doctors might point to this fact and tell how many patients they have that are healthy today because of gene therapy. This fact alone could cause others to ignore the risks and hold on to the cure instead. If it was up to me and it was my family member, I also would choose to at least consider this therapy. I don’t necessarily agree with the risks but I have to be honest and say that I would look at it long and hard. Too many friends and family members have passed away from cancer for me to say that I wouldn’t consider it. Even knowing the huge risks, it would be a hard decision for me to make, but I would want my loved ones to have the chance at a healthy life.

The other positive fact of gene therapy is that it is well regulated by the government. The Recombinant DNA Advisory Committee (RAC), the US National Institutes of Health and the USDA follow testing carefully. Before each new trial, the Institutional Review Board and the Institutional Biosafety Committee must approve the trial. (“Is Gene Therapy Safe?”) This hopefully would cut down on experimenting too deeply into a person’s genetic makeup. At this point, scientists are only researching one generation from the patient. I can only hope they cannot change genes for many generations yet. There is much oversight and that makes it feel just a little bit safer. Even elected men and women in the Senate can be part of an advisory board to watch this unfolding scientific breakthrough.

Opponents and advocates for gene therapy obviously have one common value and that is the value of life. One side wants to protect the current patient’s life and the other seems to favor the future person’s life. But, in any regard, life is considered important to both sides.

There was a woman I knew many years back that had a child that had numerous health problems. Her son Matt couldn’t walk, talk, feed himself or anything independent. She had a second son named Josh who seemed to be totally fine. He was happy, had full use of his body and could talk very well. Then they had a third child. They knew before he was to be born that he would have most of the same problems that Matt had due to the fact that both parents had a “bad” gene. She chose to continue her pregnancy and had their third boy. This child was not as severe as her first, but he was still very challenging. I often wondered why they would have gotten pregnant knowing the risks and the real possibility of special needs. However, I am not them and I cannot choose their children for them. Once I spent some time with this youngest child, I knew in my heart that they had made the right decision. He is so beautiful in his own way and no genetic manipulation would have changed that. For them, to have him as he is was the only answer.

In summary, there are too many unknowns yet in this fairly new procedure to think that the general public could benefit from it at this time. However promising this therapy appears to be, it cannot outweigh the facts that it is untested for long term effects, both for the patient and for his/her children. Mistakes could be made that cannot be undone. Children can be designed in a laboratory and not by Fate, or God. Children that are not born perfect might be devalued in this new society. Many people could even die from new diseases or cancer caused by this therapy. Because it is still so new, there are no real, solid answers to the question: “Is it worth the risk?”