Essay, Research Paper: Genetic Testing

Genetic Testing Privacy
With new technology being developed everyday, there are more and more questions being asked in regards to the way that it will be used. Along with the any benefits of technological developments there can also be drawbacks. One example of controversial technology is genetic testing. Not only is the process itself causing a stir but the way in which the results of these tests are being protected.
Genetic testing can be vital in some situations, but in some cases this testing can cause many problems. The most common concern that comes along with this highly sensitive and personal information is the question of who should be allowed to have access. If a patient is genetically profiled and is notified that they have a genetic disorder that in the future will take their life, should those test results become a part of their medical history? The issue also arises whether a physician or other health professional providing genetic testing services should be permitted without the patient's consent or over their objection to reveal test results to third parties. The rule is no different than for medical information in general: confidential information about a specific patient should be revealed without patients consent only when necessary to protect other people from harm.
If this rule holds true, then no one that the patients did not inform themselves should know. The question then is, when is disclosure of genetic information permitted in order to protect a third party from harm. If a parent has a genetic disorder that could possibly have been passed down to their children, can a physician over the patient s objection and reveal the positive test result? If the mother or father has made the decision not to share that information, even with their family, that right should be respected.
Unfortunately this is not happening and people are being discriminated against every day because of their genetic make up. If for example a person were to apply for health insurance, and the company looked in his medical file and discovered that they had a genetic disease that will claim their life, it is very possible that this person will be denied the insurance. The company is not going to want to pay claims for a person that they know will be very sick later in life. It is perfectly legal for an insurance company to pick and choose who they will insure, and so right now there is no legal action that can be taken if a person is discriminated against based on their genes. Not only does this type of prejudice occur in the insurance business, but also in the work place. Without the tested patient even knowing, their test results could be disclosed about them to a company they are employed by, or are applying to. There are many companies as well that would not want to hire, or possibly terminate an employee who they know will be afflicted with a disease.
Genetic testing can help a person or families prepare for the future, or a couple planning to have a baby know what to expect. When the privacy privilege is abused it discourages people from using genetic testing for the many benefits it has. The threat of genetic discrimination leads individuals to decline genetic screenings and other health services out of fear of revealing information that may be used against them. For example, the Journal of the American Medical Association reports that only 57 percent of women at risk for breast cancer seek genetic testing, and 84 percent of those who decline the test do so because they fear genetic discrimination. Genetic tests can provide people valuable information that can prevent the onset of illness. Genetic tests do not show with certainty that an individual will eventually develop the disease or how severe the symptoms might be. Therefore, employers must not be allowed to discriminate based on a genetic make-up.
There are several pieces of legislation being proposed right now to help keep privacy. Tough sanctions, even criminal penalties should be considered to keep our most intimate genetic information out of the hands of those who would us it, not to treat individuals with diseases or to develop medicines but to discriminate. The reason for this position is more than just the traditional concern for patient privacy and the need to maintain the integrity of the patient-physician relationship. The problem is the risk of discrimination, particularly in access to health insurance and employment
The benefits of genetic testing are being shadowed by the fear of exposure. The privilege of that information belongs between the doctor and the patient. If people cannot feel comfortable using new medical technology then we will never know the full extend of help that it can bring our society. People deserve the right to know their future, and decide who has access to that information.
Works Cited
Williams, Gerald. Genetics in the Real World. Health Weekly 17 March 1997: 44-47.
Genetic Discrimination. Science Journal Online Vol. 12. Dec. 1999. http://www.sciencejournal.org
Forester, James G. The Genetics Race. New York: College Press, 1990.