Christine Adams, Kristy Burja, and Parker Smith

Group #6, 1

Genetic Testing:

How Far is Too Far?

by

Christine Adams, Kristy Burja, and Parker Smith

Group #6

IDS 3303

Professor Schnackenberg

14 February 2005

Genetic engineering is emerging as one of today’s newest and most intriguing sciences. Modern scientists have unprecedented control over minute aspects of human development, in areas that could only be imagined a decade ago, and even more power is predicted in future years. While there are many benefits to genetic research, especially in the field of preventative medicine, ethical issues arise when doctors assume too much control. Are we playing God? At what point must we draw the line for a standard of ethical medicine? How far is too far? Before we can discuss these questions, we must first understand the science behind the procedures involved.

One of the most important components of genetic engineering is genetic testing. As defined by the Human Genome Project Glossary, genetic testing is “the analysis of an individual's genetic material to determine predisposition to a particular health condition or to confirm a diagnosis of genetic disease.” The genetic material referred to here is deoxyribonucleic acid, or DNA, found in the nucleus of every cell in the human body (except for mature red blood cells, which contain no nuclei).

The DNA of a nucleus is tightly coiled in structures called chromosomes, and each strand of DNA is composed of subunits called genes. Chromosomes and genes play an important role in the genetic testing process. In general, genetic tests analyze these two specific components of the genetic material to find errors or mutations that indicate a certain disease or condition. “Causative genes have already been identified for approximately 1,000 hereditary diseases, and as the Human Genome Project proceeds, this number will inevitably increase” (Boylan and Brown 87). The Human Genome Project is the internationally recognized scientific endeavor to map out the entire human genome. By mapping the genome, scientists can locate the specific genes related to many diseases. Without the work done by the Human Genome Project, genetic testing alone would be considerately less effective at identifying genetic disorders.

There are currently around 900 different types of genetic tests that can be performed to analyze genetic material and identify “problem areas” in a person's DNA. The two major groupings of genetic material analyzed in these tests are chromosomes and genes. Karyotyping and a variation known as spectral karyotyping (SKY), for example, are two types of tests that examine chromosomes for errors and abnormalities. Karyotyping was one of the first ways scientists were able to identify genetic mutations. A karyotype is basically a pictorial representation of an individual’s 23 paired chromosomes. The difference between karyotyping and SKY is that the 23 chromosomes in a karyotype are monochromatic, while the chromosomes in a SKY are tinted with fluorescent colors. The different colors help scientists to better distinguish between the different chromosomes and find abnormalities more easily. Two types of tests that analyze genes are mutation analysis and gene sequencing. Mutation analysis tests for the existence a specific type of mutation or a set of mutations on a specific gene, whereas gene sequencing examines a larger area of the gene to detect multiple mutations in the tested region.

Genetic testing is done for a variety of reasons, but it can be broken down into two main categories: tests that are usually performed on adults, and tests performed on unborn or newborn babies. Each of these two categories consists of three types of tests: diagnostic, predictive, and carrier testing are usually performed in adults, whereas prenatal, preimplantation, and newborn testing are performed in unborn and newborn children.

Diagnostic tests are used to diagnose the presence of a genetic disorder or eliminate the possibility of one in a symptomatic individual. Predictive tests are performed in an asymptomatic individual with a family history of a genetic disease. The predictive test can suggest that development of the disease is likely, but cannot determine with certainty that it will happen. Carrier tests are done to identify whether or not an individual is a carrier of a genetic disease, which means that the person's family has a history of the disorder but that the person will not actually develop it, instead carrying the gene for the disease in his or her DNA to pass it on to later generations.

Prenatal, preimplantation, and newborn testing are performed on unborn or newborn babies. Prenatal tests are done during a pregnancy to assess the presence of a genetic disorder in the developing child. They are usually only performed on fetuses at risk due to ethnicity, family history, or the age of the mother. Preimplantation tests are performed on embryos used for in vitro fertilization before they are implanted into the mother. Again, this type of test is usually only done on at-risk embryos. Parents usually opt for this test as an alternative to the prenatal test so that if a genetic disorder is present, they can choose not to implant that embryo and avoid having to abort a child during pregnancy. Newborn tests are done on newborn babies who have an increased risk of a genetic disorder, so that treatment for the disorder can be started soon after the baby is born.

Scientists are using forms of genetic testing to allow parents to end pregnancy or choose to avoid conception altogether if a genetic defect is present. These forms of testing are called antenatal or prenatal genetic testing. One specific form of genetic testing is amniocentesis. Amniocentesis is “a procedure in which a small sample of amniotic fluid is drawn out of the uterus through a needle inserted in the abdomen. The fluid is then analyzed to detect genetic abnormalities in the fetus or to determine the sex of the fetus” ( This testing is offered in doctor’s offices and many abortion clinics. Some reasons for having this procedure would be pregnancy later in a woman's life, history of genetic disorders, or a previous child born with genetic defects (Park Nicollet). This form of genetic testing opens the door to the debate of purpose and consequences. What is the purpose of genetic engineering? Is it a form of eugenics? Is this becoming a gateway to a generation of “designer children?”

In World War II, Adolph Hitler sought to create a superior race through the mass extermination of Jews. This is a form of eugenics, the pursuit of perceived hereditary improvement by means of controlled selective breeding. The correlation between Hitler's genocide and the abortion of a genetically defective baby is arguable, a controversial subject due to the questionable personhood of an unborn fetus. Margaret Sanger, the founder of Planned Parenthood, was an admitted eugenicist. In her book, Woman and the New Race, she writes that her work was “nothing more or less that the facilitation of the process of weeding out the unfit, of preventing the births of defectives or those who will become defectives” (“Margaret Sanger”). For Margaret Sanger, the purpose of her testing was elimination of an inferior child.

The purpose of testing may not be the deliberate intent of eliminating an inferior genetic pool. According to Harris Modell and colleagues, the purpose of such carrier screening is to “permit couples who are at risk to make an informed choice among available options, including prenatal diagnosis in every pregnancy” (Gilliot). They also say that “a reduced birth incidence of the condition as a whole might be the outcome, but it is not the aim.” Thus, prenatal testing is genetic testing with an added unintentional manifestation of eugenics in the long-term.

While some scientists and doctors may say that the purpose of their testing is simply to end future pain and suffering for parents and their children, they might be inadvertently creating a future of designer children. As World Watch magazine states, “we are already at the stage where we can selectively terminate our offspring if certain genetic criteria are not met. Soon it may be possible to discern, and ultimately select for or against, individual traits in our children” (Dorsey). The How Stuff Works web site explains that “once the mapping of the human genome is finished, scientists will begin to discover what each gene does and how it functions. At that point, it might be possible to manipulate the genes of embryos” ( This would mean that parents could pick such things as eye color, hair color, and maybe even personality traits – an end that is vastly different from, and perhaps far more unsettling than, the mere prevention of illness.

An example of prenatal tests and the influence they have on termination was taken in a journal in Europe. “The objective of the prenatal detection was to detect Congenital Heart Defect. There were 2456 cases detected and of those cases 293 of these cases were terminated by abortion” ( Is this an example of modern-day eugenics? John Gillon says that selective termination of pregnancy is making a judgment about impairment. Parents are using this testing as a way to determine what is best for their family. Currently this decision is based on the expected life of the child affected by a particular condition. But what if, somewhere in the future, genetic defects are eliminated and less critical criteria become the pivotal factors of these decisions? Do scientists and doctors begin to test babies for eye color, personality, and beauty? Would the prospect of “social suffering” be viewed as highly as actual physical suffering by genetic disease? Only time will tell.

The human race is capable of identifying and treating diseases in a way that is borderline miraculous, and it is capable of unbelivable atrocities. As Peter Parker's uncle explained in the movie Spider-Man, “with great power comes great responsibility.” So must our scientists and doctors understand the tremendous power they wield, and use it in a way that contributes to the legacy of human life and wellbeing. Though the ethical issues are still hotly debated today, we can only hope that a code of conduct will emege, soon, to protect our children from a future they might never be able to see.

Annotated Bibliography

Boylan, Michael and Kevin Brown. Genetic Engineering: Science and Ethics on the New Frontier. Upper Saddle River: Prentice Hall, 2001.

This book presents both the ethical issues and the science behind genetic engineering. The first half of the book goes into great detail about the scientific aspects of genetic engineering. It gives an in-depth look at the biology of DNA and basically gives an introductory course in genetics. Then the second half of the book goes into the ethics behind genetic engineering. The two authors of the book are both very specialized in their careers. Michael Boylan has a Ph.D. from the University of Chicago and is professor of philosophy at Marymount University. Kevin Brown received his M.D. from Cambridge University and is a Visiting Scientist at the National Institute of Health. The book often only presented positive aspects of genetic engineering and I felt strayed away from the more controversial issues that surrounding the topic.

Dorsey, M. “The new eugenics: it used to be forced sterilization, and the experiments of Dr. Mengele. Now it’s genetic technology and the free marker. The people who dream of creating a superior race are back.” World Watch. July-August (2002) v15 i4 p21(4) <

This is a brief article that talks about the “not so distant” future of genetic engineering. It talks about how rapidly the world is coming toward a robotic existence.

Gilliot, J. “Screening for Disability: Eugenics Pursuit.” Journal of Medical Ethics. Oct (2001) v27 i5 pii21 <

This article is about whether or not selective termination is a form of Eugenics., when this termination is based on the finds of an fetus having a genetic disorder.

How Stuff Works Inc. How Stuff Works.
Site that tells how prenatal testing works and also tells about how designer children will work.

Human Genome Project Information: Genome Glossary. 9 July 2004. U.S. Department of Energy Office of Science, Office of Biological and Environmental Research, and Human Genome Program. 5 Feb 2005 <

glossary/glossary.shtml#genetictesting>.

The Human Genome Project Glossary page is a listing of a couple hundred or so terms associated with the various aspects of the Human Genome Project. The list of terms include terms about biology and chemistry, but they are mostly terms associated with genetics, such as what a gene is or what DNA is. This glossary was compiled by the Human Genome Project, which was a 13-year project coordinated by the U.S. Department of Energy and the National Institutes of Health. I thought the site was very helpful for someone not familiar with the many terms involved in understanding genetic engineering.

Lexico Publishing Group,LLC. Dictionary.com (2005)<

This is a multi- source dictionary where you can type in a word and receive the meaning to the word.

“Margaret Sanger and Planned Parenthood: The Eugenics Connection.” National Right to Life News. July(2004) v31 i7 pNA <

This article discusses whether or not Margaret Sanger was a Eugenist, and if Planned Parenthood is an extension of her practices.

Park Nicollet Clinic. <

A website for women to find a doctor that will perform amniocentresis, or where they can ask questions on the process.

.

This is a web site with statistics that show the relation between positive gentic defects tests and selective termination.