With the completion of the human genome project, the concept of predictive genetic testing has come to the forefront of medicine. Now that the human genome has been mapped, it is possible to determine whether an individual has the allele for an inherited disorder. The two modes of testing are either prenatal or postnatal testing. Many states currently perform several tests on all live births, in addition to the extremely common amniocentesis; Illinois screens specifically for biotinidase deficiency, congenital adrenal hyperplasia, galactosemia, hypothyroidism, phenylketonuria and sickle cell disease (IDPH). These are rather essential tests as they relate specifically to the health initial of the newborn, and this paper will not debate the morality behind these. The focus of this paper will be on the questionable alleles; those alleles are the ones which have not been studied for as long or the ones whose effects may not be seen more many years or even decades after birth.

The most potent argument set forth by the proponents of appears to be the ability of the individual to prepare for the likelihood of being affected by the disorder in question. For example, if an individual determines at 30 that they are predisposed to Huntington’s disease, they may make preparations for their own care were they to lose their own capacities. "Symptoms may include involuntary movements and loss of motor control. In addition, personality changes may occur, with loss of memory and decreased mental capacity. Symptoms in individuals, as well as confirmation of diagnosis in other family members, are used to determine the diagnosis." (Collins) With such a devastating disorder, many people would desire to know that their own risk of being affected by it so that their wishes may be carried out with respect to their own medical care.

The opponents to predictive genetic testing also have valid arguments. Quite a bit of recent legislation has focused on individual privacy, particularly in personal health information, and an opponent to testing would argue how public the record of these tests would be. Insurance companies may deny coverage to individuals based on preexisting conditions, those that they have prior to applying for coverage. Would genetic disorders be included in these disqualifying conditions considering they were all obtained at conception? It would be extremely difficult to lobby against the might of these large organizations as they attempt to gain legal access to the results of the genetic tests. As it is, there are a great number of people who cannot afford to obtain quality insurance. with genetic testing on the horizon, included would be many people who are gainfully employed, but have been diagnosed with a predisposition for a disease and cannot procure insurance due to that diagnosis. Insurance companies are not the only ones who may desire to know who is likely to have which disorders. Employers would argue that it is their right to know whether any of their employees are going to wind up with a disabling disease, and will lobby for the ability to view the results of the tests. This is a major concern. Who knows what the employers will do with this information. Knowing that an individual is likely to have a disorder, an employer might decide to terminate the subject’s employment as it would limit their own expenses by controlling their share of the money spent on the employee’s insurance, as well as possibly replacing the employee with one who is not predisposed to any known disorders and thereby having a more profitable employee.

Chorionic villi sampling is a method which may be utilized to test a developing fetus for genetic disorders as the cells that are sampled originate from the chorion which is fetal tissue, not maternal, and therefore shares the fetus’s genetic makeup. Using chorionic villi sampling, people could go as far as to contemplating eugenics. What is stopping a pregnant woman from having an abortion because the developing fetus has a genetic disorder? What is stopping the state telling her that she must? The state cannot currently do so, but looking down the line, there may be a time where the state takes it upon itself to limit which children may be born considering their genetic makeup. Many people would be easily convinced if told that their child would be a huge burden on them and everybody they know whether or not it is the truth. It is a commonly believed fact that the eugenics movement lost steam in the 1920s; however "researchers said sterilization laws had authorized the neutering of more than 40,000 people classed as insane or ‘feebleminded‘ in 30 states by 1944. Another 22,000 underwent sterilization from the mid-1940s to 1963…" (Morgan)

What if an individual tested positive but never showed symptoms of the disorder? Testing an individual for an allele does not necessarily mean that the individual will express the gene in question. Some disorders have a greater penetrance, the frequency of the expression of an allele if it is found to be present, and all disorders have different expressivity, the degree to which the individual is affected by the disorder. The genetic tests are predictive; they determine whether an individual has a predisposition for a disorder and are not diagnostic as most medical exams are. A diagnostic exam takes into account one’s symptoms and determines a diagnosis based upon those. The expressivity must also be brought into question. It is currently unknown what causes the degree to which one is affected by many genetic disorders; and some may, therefore, have a severe form of the disease in question or a much more mild form of the disease. Most people are unaware of this and would probably assume the worst possible outcome.

The author believes strongly that there are incredible possibilities associated with genetic testing. With greater research, we may be able to make great strides in early diagnosis of inherited diseases. With the ability to determine which inherited diseases people might come down with, however, people must be properly counseled so that they may effectively live with their situation. Additionally, it is imperative that the results of any genetic testing performed be regarded as private as allowing insurance companies or employers to access the information could prove to be disastrous.

Collins, Debra. "Genetics of Huntington Disease." Kansas University Medical Center. 15 Feb. 1999. Kansas University Medical Center. 10 Nov. 2005 <http://www.kumc.edu/hospital/huntingtons/genetics.htm>.

European Commission, European Group on Ethics in Science and New Technologies, "Opinion 18 on Ethical aspects of genetic testing in the workplace", July 2003.

Morgan, David. "U. S. Eugenics Paralleled Nazi Germany." Chicago Tribune 15 Feb. 2000: 20-21. Academic Search Premier. EBSCO.

"Newborn Screening." Genetics and Newborn Screening. Illinois Department of Public Health. 10 Nov. 2005 <http://www.idph.state.il.us/HealthWellness/newbornfaq.htm>.