Case Studies: The Price of Silence

By Fletcher, John C.; Wertz, Dorothy et al. | The Hastings Center Report, May-June 1990 | Go to article overview

Case Studies: The Price of Silence

Fletcher, John C., Wertz, Dorothy, Lynch, Abbyann, Czeizel, Andrew, Salzano, Francisco M., Berg, Kare, The Hastings Center Report

Mrs. S, at age forty-five, has just been told dud 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. Some. times, as in Mrs. S's family, there is no family history of HD because those who had the gene died before symptoms could appear

Mrs. 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 diagnisis so 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?-John C. Fletcher and Dorothy Wertz COMMENTARY This scenario gives rise to at least four ethical dilemmas. Of immediate concern is the ethical balance to be achieved between respecting Mrs. S's autonomy (maintaining confidentiality in the matter of her illness) and providing appropriate care for her (organizing a coordinated, continuing support system as her illness progresses). Ideally, the latter activity will include her relatives, who will learn of her illness later, if not sooner. In the immediate case, the family physician must choose to care for Mrs. S either as an individual or as a family member.

In either situation both her family physician and the genetic counselor face conflicting ethical concerns regarding any communication with Mrs. S's relatives. To apprise them of the possibility of their risk for HD is at once to violate any desire they might have to remain ignorant of that risk. At the same time, granting that Mrs. S has a claim to confidentiality, her family surely has some claim on the practitioners (and on Mrs. S) that they be forewarned of any harm or injury Mrs. S might cause them by reason of her progressing illness (for example, possible injury to passengers in her car, should she suddenly lose muscle control while driving the vehicle; possible mental anguish, if family members are subjected to illness-caused rage exhibited by Mrs. …

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