Karen and Roger have decided to start a family. Again. It has been nearly six years since their first and only child, Katie, was born, and just over two years since she died. In her four years of life, Katie was plagued with the fatal Tay-sachs disease. Because the enzyme needed to rid her brain of fatty materials was absent at birth, she lost her sight when she was only eighteen months old. Her ability to operate the left side of her body was gone several months later.
Understandably, the loss of their daughter devastated the young couple. The difficulty of watching their little girl suffer and knowing it was their genetic makeup that caused her pain made it harder to try having another baby. They honestly didn't know if they could bring another child into a world of hurt and certain death.
Breakthroughs in genetic technology has brought hope for healthy children to the distraught couple. Through embryo diagnosis, it is very possible for Karen and Roger to have a baby that is free of the horrible disease. What they struggle with now is whether they believe it is ethically correct.
In the fast-paced, ever growing world of genetics, we as a responsible society must take time to scrutinize the new technologies from both ethical and scientific standpoints. The questions we are to answer are both difficult and morally challenging. One such question involves embryo diagnosis. Is it morally correct to pick and choose which embryos are genetically acceptable? On the other hand, how ethical is it to allow a child to be born with a terminal disease, when technologies at hand could have prevented such pain? After looking at both sides, it is my belief that embryo diagnosis can do the human race worlds of good, but only if handled and understood correctly.
Every day our genetic knowledge advances one step closer to the key of life. These steps are being made by the Human Genome Project, located in Bethesda, Maryland. This project began in 1990, and those involved estimate a span of fifteen years before it is finished (Rinard 4). Its purpose is to locate all of the human genes on our twenty-three chromosomes, and the traits associated with them. With this new information, geneticists will and are able to place markers on those genes that give rise to certain genetic diseases or those that predispose a person to a particular behavioral pattern. Already this technology has successfully been put to use in testing embryos for several hereditary diseases.
The process is called embryo diagnosis. In the case of Tay- Sachs disease, which is recessive, the embryos of parents that are both carriers will have a twenty-five percent chance of being positive. Doctors work with these embryos created through in-vitro fertilization to select those thought suitable for implantation. The embryo is allowed to develop into an eight-cell ball, at which point one of the cells is removed. The DNA extracted from the chosen cell undergoes examination for an abnormality that would cause the disease. Tay- Sachs disease is located on chromosome fifteen. If genes on this chromosome are found to be positive for the disease, the embryo is discarded. However, if no genes for the disease are found, doctors give the go ahead and implant the "good" embryos with the hope of it developing into a healthy baby (Kolata Al).
Those who oppose embryo diagnosis have some reason to do so. A main concern is over whose needs are being met, the parents', the child's, or the physician's. There is worry that doctors may recommend embryo diagnosis to head off any charges of malpractice. From this concern stems the question of exactly who should be offered the diagnosis. Should doctors offer testing to every couple trying to have a baby, regardless of whether they are or are not at risk of having a bad genetic connection? It is feared that only the rich and educated will receive the testing, even though there are others who also need it.
People fear eugenics will again become popular. Eugenics, first proposed by Frances Galton in 1865, is the idea that better breeding would undoubtedly improve human society ("Footnotes" 130). The possibility of predicting not only diseases, but specific traits such as eye color, height, and intelligence levels makes eugenics very possible and much easier to attain. Not only is eugenics ethically incorrect, but it will also have a negative effect on our genetic diversity.
Testing embryos for predispositions to certain behavioral tendencies like violence, schizophrenia, alcoholism, or homosexuality could also lead to unfair destruction. Nurture and environment are also factors that constitute behavior, as well as genetics.
Once these tests have been performed, there is no guarantee that the results are absolutely written in stone. It is possible to terminate perfectly healthy embryos and unknowingly implant those with the dreaded disease. Also, doctors are unable to predict the true extent of the disease. An embryo diagnosed as positive may develop into a child with less severe symptoms and still be able to lead a somewhat normal and productive life.
Some wonder about the defective embryos. Their existence is due only to the chance that two people may have a healthy child, and to destroy them seems cold. Gary D. Hodgen of the Jones Institute has a response to this concern. "We don't for a minute pretend an embryo is paper wad," said Mr. Hodgen. "We know it's a potential human life (Wheeler A10)."
A big question being asked by many is who gets the information from the results of the diagnosis. There have already been cases in which insurance companies have denied health coverage to parents who have opted to raise their child, despite grim test results. "That gets me sick. What this means is that the insurance industry is not in business for your health or my health," says one frustrated mother (Beers 278). Her son was put into a high-risk category and they had to pay expensive fees even though his condition could easily be controlled by an inexpensive drug.
Although there are reasons against the diagnosis of embryos, this technology should not be dismissed so quickly. Many of these negatives can be remedied through rigorous education, availability of information, policy making, and time. This effort will not be easy and will require soul-searching from all walks of life.
The many benefits of embryo diagnosis of embryo diagnosis cannot be ignored. Parents afraid of having children because of what they might pass on to them now have much less of a chance of doing so. Families can finally rid themselves of fatal diseases that have been in their bloodlines for generations. It is hoped that horrible diseases could be eliminated from existence. The prevalence of cancer and other such illnesses could be brought under control.
If doctors discover an embryo has a tendency toward a disease, genetic technology can possibly repair the gene causing the disease. Knowledge of a disease before a child is born allows physicians to make clearer decisions about care, nutrition, and special needs of the child. Parents will be able to better prepare themselves emotionally and financially to accommodate their baby's condition and provide the necessary environment.
For those couples who feel they cannot proceed with an abortion should their baby have inherited a fatal disease, embryo diagnosis brings help. Embryo diagnosis requires that decisions be made before implantation, before emotional attachment, and before the embryo takes on true life features. Couples are spared the battle of ethics, emotional stresses, and heartbreaking decisions and given a chance for healthy children.
I have decided, after thoroughly considering the issues of both sides, that I am in favor of embryo diagnosis. The reasoning behind my decision is that the pros far outweigh the cons, and technological advances are inevitable.
As the technology is further developed, a greater amount of certainty is sure to follow. Doctors will be able to obtain more precise test results. Testing itself will hopefully become more specific. Rather than knowing an embryo is just plain positive for a disease, doctors would be able to predict the severity and the possibility of preventing or treating the disease. Other concerns, such as eugenics, insurance companies, fear of the unknown, effects on genetic diversity, and deciding who should be offered these genetic determining tests can all be brought under control. The way this can be done is through international decisions, laws, and ethical stands. People need to understand this technology before they can pass ethical judgement on it. Education is necessary, as is public involvement . Scientists alone cannot make these decisions by themselves. They have handed the general public these technologies, and it is up to us to decide what we shall do with it.
After discussing the ethical issues surrounding embryo diagnosis, Karen and Roger did decide to go ahead with the testing. From Karen's eggs and Roger's sperm, seven embryos were created, two of these were diagnosed with the Tay-sachs disease. Doctors implanted the remaining five healthy embryos within Karen's uterus, with the hope that at least one would survive the nine month wait. Thanks to advances in genetic technology, and some difficult soul searching, Karen and Roger were able to do what terrified them most. They not only had one, but two beautiful babies. Both were born free of the disease that had taken their sister, Katie.
Bonnicksen, Andrea. "Genetic Diagnosis of Human Embryos." Hastings Center
"Footnotes." Scientific American June 1993: 130
"Healthy Baby is Born After Test for Deadly Gene." The New York Times 28
Institute of Medicine. Assessing Genetic Risks National Academy Press
Kastilahn, Kathleen. "Back to Genesis." The Lutheran Feb. 1993:9-15
Kolata, Gina. "Genetic Defects Detected in Embryos Just Days Old."
Rinard, Peggy. "Mapping the Inner Frontier." Health Sciences 1992:3-7
Thompson, et al. Genetics in Medicine W.B. Saunders Company, United States.
Wheeler, David L. "War on a Disease." The Chronicle of Higher Learning May 18, 1994