The ethics of genetic engineering
In 1997, Ethan Hawke starred in a little-known movie about human genetic engineering called “GATTACA.” The title cleverly uses only the letters G, A, T, C, which stand for the four bases that make up deoxyribonucleic acid, better known as DNA. The movie was not a huge hit, but the topic it addressed certainly struck a chord with many people. According to the website for the Internet Movie Database (IMDB.com), “When Gattaca was first released, as part of a marketing campaign there were adverts for people to call up and have their children genetically engineered. Thousands of people called, wanting to have their offspring genetically engineered.”
Five years ago, a young boy named Adam Nash, a product of IVF, or in vitro fertilization, was born. Adam’s sister Molly had been diagnosed with a rare blood disorder called Fanconi anemia and needed a bone marrow transplant. Since Molly had no siblings, there was no biologically compatible donor for her. Molly’s parents decided that they would utilize modern science to help them conceive a child who could serve as a donor for Molly. Scientists created a number of embryos using IVF and then tested them for the presence of the genetic mutation that is responsible for Fanconi anemia. Only embryos lacking the mutation were considered for implantation, and nine months later, Adam was born. Doctors used blood cells from Adam’s umbilical cord to provide a transfusion for Molly. One year after treatment, Molly was attending school and living like any other healthy child.
It should be noted that the Catholic Church is opposed to most forms of IVF for a number of reasons, but primarily because this procedure requires scientists to create several embryos, some of which will be discarded as waste products (see link at bottom). Nevertheless, both the film and its real-life corollary demonstrate that there is surely a demand for genetic technology to create healthy children. Clearly we live in a consumer-driven culture that places a high premium on the ability to choose. This fact was driven home to me during my recent purchase an automobile from a dealership. I was able to choose the color, both exterior and interior, as well as what type of sound system and wheels I wanted. The salesman wanted to make sure that I knew that I had a plethora of choices, and while some may cost more than others, the choices were completely mine. While it is not yet possible to engineer a baby to exact specifications, there is certainly a demand in our society for having that capability. What are the ethical implications of this scientific technology? Should we hope for a future where we can engineer our children to be a specific height, gender, eye color or intelligence?
Gene therapy involves replacing defective genes with healthy ones within an organism’s cellular nuclei. In the case of human beings, there are two kinds of cells, germ line and somatic cells. Germ line cells are the “sex cells,” sperm and egg. Altering the genetic structure of these cells means that the next generation (or even successive generations) could also be altered. Somatic cells are all the other cells in the body. Any modifications to these cells are contained within the particular person. Dr. W. French Anderson conducted the first human somatic cell gene therapy trial on September 14, 1990. His subject was a four-year old girl with ADA (Adenosine deaminase) deficiency, a condition that left her unable to fight off infections. Dr. Anderson injected healthy genes that code for ADA into the girl’s white blood cells, hoping that they would insert into the girls DNA and begin producing the ADA she required. According to the website for the National Institutes of Health, at present, the girl is leading a normal healthy life. Somatic cell therapy is the much less controversial procedure, but germ-line gene therapy is another story. Many scientists and ethicists, including members of the Council for Responsible Genetics (www.gene-watch.org) are against
germ-line genetic therapy. The implications of such a procedure are too unknown at this time, and in many ways, altering the genetic structure of future generations could severely limit their freedom and harm their health.
Stepping into the ethical minefield of genetic engineering can seem very daunting. It is, however, important that reasonable people of faith educate themselves on this and other important bioethical issues in order to make informed and conscientious decisions. One of the primary ethical questions is regarding the difference between therapy and enhancements. If a person consents to a gene therapy trial to help correct a genetic abnormality in their own body, for example, they carry a mutated gene that codes for an important metabolic enzyme, then that is much different than someone desiring germ line genetic modifications so that their offspring have abnormally high IQs. First, the science is not at a point where such a procedure can be done at all, let alone safely. Second, most human genetic qualities are multi-faceted in their complexity; one gene does not control human intelligence, and there are several non-genetic factors involved in intelligence, such as nutrition, quality of schooling and parental involvement with education. Third, even if it becomes possible in the future to alter intelligence for future offspring, what side effects are possible? To look at another person named Nash, the brilliant mathematician John Nash, the subject of the movie starring Russell Crowe called “A Beautiful Mind” was one of the most intelligent people of his time, but he suffered from severe schizophrenia. Is it worth risking a person’s mental health just to make them more intelligent? Meanwhile, as Jesuit bioethicist Fr. Kevin Fitzgerald, S.J. pointed out in a talk at the University of Detroit Mercy in 2002, people with Downs Syndrome are some of the most kind and accepting human beings, and yet their IQ is not very high. Who is to decide which qualities are more valued?
Catholic theologians have raised a number of questions about the ethics of genetic engineering. Lisa Cahill, theologian at Boston College, wrote in an article in the August 12-19, 2000 issue of America magazine that in all of the ethical debates about genetic engineering, we must keep a focus on the common good. Genetic therapy techniques, if they were to be improved, would only be available to the very wealthy. Meanwhile, hundreds of thousands of people in developing countries are dying of curable diseases like malaria and TB. This issue that Cahill raises aligns well with the views of the previous pontiff. In an address he delivered on August 30, 2001, Pope John Paul II told a group of rectors and professors at Polish universities, “In fact, if science is not pursued with the motive of being a service to humanity, it can easily degenerate into an efficient financial enterprise with complete indifference to the common good.”
Cahill also points out that one of the most potent dangers with regard to genetic engineering is genetic reductionism. Human beings are much more than their genes. It is possible that the desire to choose certain genetic traits is a case of not seeing the person for the genes. Cahill writes, “The age-old cultures of the world attest that humanity has a spiritual and transcendent side that unites our embodied physicality with something that makes our species unique. Persons, not genes make possible cultures, art, religion, philosophy and self-conscious, other-regarding love.” Perhaps instead of trying to engineer better genes we should consider trying to help form better persons.
For more information on what the Catholic Church teaches about reproductive issues, look at the encyclical Donum Vitae.