The Price of Silence John C. Fletcher and Dorothy C. Wertz
The Price of Silence
John C. Fletcher and Dorothy C. Wertz
Mrs. S, at age forty-five, has just been told she has Huntington disease, following a workup--including CAT scanning of the brain-after she developed abnormal body-jerking movements. Huntington disease (HD) is a disorder of genetic origin, appearing without warning between the ages of thirty and sixty. It causes irreversible mental and motor deterioration, leading to death after several years of intense suffering for both patient and family. There is no treatment. The disease is a Mendelian dominant disorder: everyone who has inherited the gene will develop the disease and will also transmit it to half of his or her children. By the time its symptoms appear, most patients have completed their childbearing and may have transmitted the gene to another generation. Until recently, no tests could tell whether the children of a person with HD had inherited the gene. They had to wait for symptoms to appear. Sometimes, as in Mrs. S's family, there is no family history of HD because those who had the gene died before symptoms could appearMrs. S has three children, ages sixteen, nineteen, and twenty-four; her eldest daughter married last year. She also has three sisters and a brother, ages thirty-four, thirty-five, thirty-seven, and forty, who have eleven children ranging in age from two to twenty. None of her siblings has developed any symptoms of HD, nor do they suspect they are at risk. However, new developments in diagnostic technology make it possible, in some families, to test people for the presence of the HD gene before they develop symptoms. it is also possible to test fetuses.Although both the genetic specialist and the family's doctor have tried to persuade Mrs. S that it is her moral responsibility to tell her siblings and children of her diagnosisso that they can plan their lives with the knowledge that they are at 50 percent risk of developing HD, she refuses. Mrs. S says she is ashamed of her condition and is afraid that her family will ostracize her or that her employer will fire her.Unless members of Mrs. S's family know that they are at risk for HD, they will not be able to request the tests. Moreover, even if the doctors tell them that they are at risk, the relatives will still not be able to use the tests, because DNA testing requires a blood sample from a family member who has HD to identify the DNA markers for the gene specific to that particular family. Mrs. S says that she will not cooperate in testing.
What should the doctors do? Should anyone besides Mrs. S know the diagnosis and what it means for the family? Should the public health department require doctors to notify all persons at risk of developing the disease?
Reference: Crigger BJ,(1998). Cases In Bioethics: Selections From The Hastings Center Report. New York: St. Martin’s Press.
Huntington Disease
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Huntington disease
Huntington disease is an inheritable disease that affects the multiplication of nerve cells in the human brain. Symptoms of the disease may immerge earlier or later than the age of 40 in cases of children of person living with Huntington. Huntington that develops before the age of twenty is referred to as Juvenile Huntington whose symptoms are revealed very early because of the fast progression of the disease. There is medication provided to the victim to slow down symptoms of Huntington, but there is no cure for the disease (Crigger, 1998). Many people who have Huntington disease hesitate on getting tested and getting the revelation that their entire family might be affected. This paper will discuss ways in which awareness and medical checkup towards regulation of Huntington can be exercised.
Testing genetics remains to be a personal decision. Testing for Huntington might create fear because one might create in mind that he or she has less than 20 years to live. Before the test, symptoms may not be observable, and the individual may not need to get tested as a positive result might create fear and depression leading to other health problems. Testing for hunting ton as early as possible is important because once an individual finds positive results, he or she will be able to plan more effectively according to the remaining time of living (Torrents, 2003). In the case, Mrs. S doctors should insist on carrying on a test by convincing and enlightening her on dangers that her family might undergo. Mrs. S has three children, one of the children or maybe even both have carried the same gene that will trigger Huntington symptoms. Doctors should advise her to take the test for the benefit of the children and the continuity of her kin. The earlier that Mrs. S’s children get tested ...