Genetic Testing

Stephen Hankinson

Barbara Biesecker, M. S., of the National Human Genome Research Institute’s Medical Genetics Branch, defines genetic testing as screening a population group to identify a subset of individuals at high risk for having or transmitting a specific genetic disorder (Glossary of Genetic Terms). Since the 1970s researchers have been experimenting with genetic testing. Today it is monitored by the Human Genome Organization. The goal of this international effort is to identify and understand the entire genetic constitution, the complete DNA code of a single individual or species (Wingerson 4). As of 1998, more than one-half of the 80,000 human genes have been identified, and more than 1,200 gene segments have been implicated in 1,500 human hereditary diseases (Wingerson 4). Genetic testing can be done prenatally or postnatally. Genes have been identified for Cystic Fibrosis, Down Syndrome, Sickle Call Disease, Tay-Sach Disease, Neural Tube Defects, and some forms of cancer. This sounds wonderful, but as Dr. Francis Collins, head of the Human Genome Project says, “there are many implications that these discoveries might present for society” (Wingerson 11). Based on the review of periodicals and literature, I am forced to take the position that genetic testing should be prohibited because of the social, religious, moral, ethical, medical, and legal implications. This paper will focus on these concerns and show that genetic testing cannot improve the quality of life.
The reliability and benefits of genetic testing raises concerns for the medical community as well as for the individual family. According to Dr. Hal Dietz, a genetic researcher at John Hopkins Medical Center, “Even tests highly reliable are not perfect. Take Cystic Fibrosis, which can be caused by more than 600 different mutations in a particular gene. Because its too expensive to test for all of them, labs usually test for the most common 70. If you get a negative Cystic Fibrosis test it doesn’t mean you don’t carry a Cystic Fibrosis mutation” (Pekkanen 27). Therefore, an individual may test negative for Cystic Fibrosis but could still be a carrier. In fact, depending on race and ethnicity, at least 15% of the carriers will test negative (Pekkanen 28). My mother is a pediatric nurse and she has seen children test negative up to six times for Cystic Fibrosis. By the time the children were diagnosed, they were severely ill. The families were devastated not only because of the diagnoses but because of the length of time it took to confirm the disease (Hankinson). The benefits of genetic testing are questionable (Wingerson 38). Once a child is diagnosed with Cystic Fibrosis he or she can be treated; however, no cure exists. Until there is a cure testing should be delayed because it does not improve the quality of life (Wingerson 38).
Dr. Francis Collins questions the effects of the results of genetic testing on individuals who may be prone to a disorder (Pekkanen 31). He knows that there is nothing he can do at the present time to prevent “blatant misuses” of genetic information (Wingerson 9). Dr. Collins has watched with intense interest and occasional insomnia as congress has slowly begun to turn its attention to the conflict between the rights of the people with genetic risk and the economic interests of employers, the insurance industry, and physicians (Wingerson 11). He fears that individuals will be discriminated against by medical and life insurance companies and employers (Pekkanen 32). The medical insurance companies may increase the rates for the individual customer who test positive or are at high risk for a hereditary disease (Hawkins). In 1993, the Biomedical Ethics Advisory Committee convinced congress to pass a law prohibiting health insurance companies from using genetic testing information to deny coverage to participants in group plans (Hawkins). Life insurance companies may refuse to provide coverage to individuals who are diagnosed with diseases. There is a fear that life insurance companies or the government may require that all people have mandatory genetic testing. Concerns also exist that employers will discriminate against employees or prospective employees once they disclose that they have a susceptibility to a particular disease. A prospective employer may not hire an individual or the employee may be demoted or terminated because employers fear that an employee cannot handle the work load.
There are social and emotional