The issue of genetic manipulation has certainly stirred up a big can of worms this past year or so. Readers may be aware of the movement in agriculture to create man-made versions of fruits and vegetables that are more resistant to frost, pests and disease. Attempts by environmentalists and consumers to have these foods labeled genetically- altered have met with limited success.
The July 1990 issue of Consumer Reports discusses another potentially serious ramification of this advance in science: genetic screening. As you may know, contained in every human cell are the genetic instructions that give each person's organs their specific form and ability to function. In the past twenty years, researchers have been able to identify some of the genes that determine whether a person is carrying the "marker" for many inherited diseases. So, for example, when a person is found to be carrying the marker for juvenile diabetes, their chances of developing that condition are much greater than if they were not carrying that marker.
In and of itself, this is a great advancement. Scientists have been able to make great strides in controlling many inherited diseases, especially ones that occur in specific cultural groups, such as Tay-Sachs disease (in Ashkenazi Jews), sickle-cell anemia (in African Americans), cystic fibrosis (in Caucasians), and various forms of a blood disorder called thalassemia (in Mediterraneans, Africans and Southeast Asians). The article notes that, "Widespread acceptance of genetic screening for Tay-Sachs disease has nearly wiped out that deadly disorder in high-risk groups. Among Jews in the U.S. and Canada, the incidence of the disease has dropped more than 90 percent since 1970."
Amniocentesis is now available for pregnant women who wish to determine if their unborn child is carrying the marker for Down syndrome, as well as other disabling or disfiguring conditions. Parents who discover that their child is likely to be born with such a problem have the option to terminate the pregnancy if they feel they are unable to cope with a "special" child.
Because of these advancements, genetic testing is routinely done in hospitals and sperm banks. "Many parents are unaware that their newborns are screened for up to nine inherited disorders. (Such testing is required by law in most states.)"
What could be the problem in having such valuable information available to the person who wishes to know? Of course, the most obvious issue is a moral one: "Because most genetic disorders can be detected but not treated, prevention means avoiding the birth of an affected child. And that backs genetic screening into the jaws of the abortion debate."
Beyond this emotional issue, however, lies a more serious problem. As genetic screening becomes more advanced and refined, its potential for abuse becomes greater. There are already movements in certain sectors of society to use this information as a kind of "crystal ball" in order to make policy decisions.
For example, one reason doctors are performing genetic screening of newborns is to avoid litigation charging failure to inform. Will the day come when an obstetrician refuses to assist a birth of a child determined to be carrying a disease that predisposes it to an early death or disfigurement for fear of being sued by the family?
Many employers and insurance companies are also utilizing this information in order to determine whether a particular applicant is a "good risk." The presence of a genetic marker does not guarantee that the carrier will develop the condition, nor can it determine the onset of the condition or the severity of it. Yet more organizations are looking at genetic screening as a sure-fire way to "beat the odds."
The article cites this frightening scenario: "When Harvard geneticist Paul Billings ran a medical-journal ad asking for reports of genetic discrimination, 29 respondents met study criteria. They'd been turned down for auto, life, health, mortgage, or disability insurance, turned away from adoption agencies, or denied employment, all on the basis of their genes. Yet most were neither disabled nor certain to become so. Some were excluded because their family history put them at risk, though their personal genetic status was unknown. Others were treated as if they were ill, despite therapy that kept them symptom-free."
Another way in which this information may be used harmfully is in the realm of social and medical policy. In the 1970's there were laws requiring all African Americans seeking a marriage licence or school attendance to be screened for sickle-cell anemia. Such laws have since been repealed, but the precedents have been set. It is not unthinkable that society may one day prohibit persons determined to be carriers of certain inherited diseases from participating fully in life.
Another disturbing development is discussed as follows: "...legal action may override a woman's rights in the interest of her child's health. Courts have ordered cesarean section when vaginal delivery would have threatened the baby's life; pregnant drug addicts have been imprisoned on charges of distributing cocaine to their unborn minors. As prenatal gene therapy or in utero surgery becomes possible, some law might require a woman to undergo treatment against her will. Another source of pressure may be subtle and more personal. Certain genetic tests require blood samples from family members, including those who might prefer to keep their genetic tea leaves unread."
We've all heard about the "Mommy track" in the corporate realm, wherein women who seek to work and also have children are placed on a path of advancement with less potential opportunity then men or childless female co-workers. Will there also be a "defective track" in the work place, in schools, etc. for those known to be carrying the potential for an inherited disease? Will we, as a society, say to these people, "You're really not worth the attention or the effort, because you'll probably be dead in a few years anyway; or you'll be so dysfunctional that you'll only be a burden."
These are issues that should be discussed now, before the technology is so entrenched that there is no turning back. Science has given us great advancements and great opportunities for human development and potential. It's important to remember, however, that science should remain a tool of human society. Too often it is the other way around: humans are seen by science as the tools for testing every new advancement developed. Society should be in the position to determine the ethical use of technological developments such as genetic screening, and not let "the tail wag the dog." The availability of a new technology does not always guarantee that it is a proper tool to be utilized in human society.
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