On the mouths of many political figures in Washington these days, is the highly charged debate about genetic screening. Genetic screening is the process of looking for indications of a genetic disease by the use of DNA, blood or tissue samples. Genetic screening is sometimes done to determine if a person can pass on a genetic disease, or even if he or she is not at risk for developing the actual condition. This is also now being used in some states as forensic evidence to convict or exonerate people of crimes such as sex offenses or felonies or other misdemeanor crimes. It also may be done as part of a study for an entire population. This procedure is undertaken for several reasons, and may be performed in several different ways, which are at the head of this impassioned debate.
Genetic screening is an extraordinary way to eliminate birth defects, racial and ethnic diseases, and allow parents to have the knowledge to make their own life decisions.
Genetic screening in itself is a great advancement in medical technology. Scientists have been able to control and somewhat prevent many of the inherited diseases known today. These types of tests can be done on newborn infants as well as adults. At birth, there are many tests performed on infants for such genetic disorders. One such test is for phenyketonuria or PKU. PKU is easily detected by a blood test and as easily treated by restricting certain foods from the diet. But left untreated, the disorder causes severe mental retardation (Weiss). Several public interest groups in the 1970’s pushed for a study on why so many of their children had these life long disabilities. In 1976 the Guthrie test for PKU become mandatory for newborns born in the United States. Dr. Ronald Jorgenson states that.
Requirements for this type of genetic screening are that it is economical, logistically possible, and reliable for the diagnosis of disease early enough to initiate a therapy that will prevent permanent and irreversible damage, even death.
In addition to helping the elimination of newborn birth defects, genetic screening can also detect and help control many of the diseases that occur only in specific cultural and ethnic groups. Such as Tay- Sachs disease (in Eastern European Jews), sickle-cell anemia (in African Americans), and cystic fibrosis (in Caucasians). People who have relatives, who already are affected, may seek genetic screening to determine if they are at risk for developing the disease. They may also want to be tested before conceiving to know if they are a carrier and able to pass it on to their children. This way, they are able to make the reproductive decisions before hand and decide if they were carriers, would they want to pass this on to their children. According to National Academy of Sciences, there has been widespread acceptance of genetic testing for Tay-Sachs and sickle cell anemia amongst their prospective ethnic groups. “The Tay-Sachs disease has been nearly been wiped out in high risk groups and the incidence of the disease has dropped more that 90% since 1970”.
What could be the problem in having such priceless information available to someone who wishes to know? The most apparent issue is a moral one. Because most genetic disorders can be detected but not treated, prevention may mean avoiding the birth of the affected fetus or aborting the fetus. This backs genetic screening in the jaws of a fiery abortion debate. Pre implantation genetic diagnosis or PGD is a form of genetic screening where each embryo created through in vitro fertilization, is tested for such genetic disorders as Down’s syndrome, muscular dystrophy or Turner syndrome. At this time, parents simply use genetic screening as a profile for each embryo created and decide which ones to implant. Director Joseph Howard of the American Bioethics Advisory Commission says the procedure is no different than an abortion. ”The only distinction between PGD and abortion is that the killing is outside the womb.” But such statements aren’t seeing the whole picture: Take the case of eight year old Molly Nash who was born with a rare disease called Fancomi anemia, which prevents the body from producing bone marrow. To survive, the child needed a transplant from a special donor. Since the parents were both carriers and unable to donate, as well as wanting more children without having the threat of passing on this horrible condition to their other children, they conceived through in vitro fertilization. Which allowed them to genetically screen the embryos so their second child would be free of the disease as well as a tissue donor for the little girl. The blood from the umbilical cord, which produces stem cells that can take over the function of bone marrow, was transplanted into the little girl. This created a whirlwind of controversy. The parents were publicly ridiculed of conceiving a child for the parts. Some ethicists criticize because unused embryos could be discarded and also fear that screening will eventually be used to help parents conceive made-to-order children with specific hair color, eye color and other characteristics. Doctors quickly dismiss these accusations, stating that genetic screening is used to detect and correct only lethal abnormalities.
By understanding that genetic screening is a up and coming yet extremely controversial medical phenomenon, it can reveal helpful information to families on inherited birth defects, racial or ethnic diseases as well as allowing them to make decisions that will affect their lives and their offspring. The legal and ethical issue will weigh heavy on all that are involved. The quality and assurance of testing facilities and most importantly the right to privacy we all hold dear. But is it ethical to conceive a child knowing that it may suffer from a horrifying disease, which you could have prevented?