Case Scenario: Carrying the Gene
Max and Mary are engaged. They are both 23 years old. A few years ago, when his grandfather became ill, Max discovered that his family carries the gene for Huntington’s disease.
Huntington’s Disease is an adult onset progressively fatal neurological disease. The disease results in the death of brain cells and loss of muscle function. It is characterized by severe, uncoordinated, spontaneous jerking movements of the extremities. Loss of the ability to talk and swallow occur and there is progressive dementia. The gene for Huntington’s disease is a dominant gene, meaning that offspring only need to inherit one gene for the disease to manifest itself.
Max’s father knows that there is a chance that he has inherited the gene but has chosen not to be tested saying, “There’s no treatment anyway, I want to live my life without a sword hanging over my head!” Max, however, believes he should find out his status and if he has the gene for Huntington’s Disease, he believes he should reconsider his upcoming marriage. He is insistent that he doesn’t want to saddle Mary with the responsibility of caring for him when the disease begins to become symptomatic.
Max is also concerned that finding out his status would automatically mean that his dad has the gene as well and will become ill in just a few years. He is concerned because he knows that his father does not want to know his status with regard to the Huntington’s gene, yet Max does not want to hide his own status should he be positive. Max is definitely sure that he doesn’t want to risk passing the Huntington’s gene on to a child and he knows Mary wants children.
Max decides to consult a genetic counselor to help them sort out the complicated issues involved in Max’s decision about whether to have genetic testing for Huntington’s Disease.
Discuss the following:
You are the genetic counselor.
1, To uphold the principle of autonomy, beneficence,
nonmaleficence, justice medical professionals should provide more
counseling when assessing risk factors of an individual with
genetic testing to find Huntington's disease and to strengthen
their psychological wellbeing.
2, Medical genetics are principles-based ethics. As a professional,
ethical principle in the course of action should be ethics of care,
by understanding patient circumstances, needs, feelings,
responsiveness as a counselor in this situation by overriding
respect for autonomy.
3, Stakeholders' involvement should be in this care are
neurologists, psychologists, genetic counselor and medical
geneticists.
4, There is ethical support for having the test using the ethic
model in this situation by offering predictive test as a counselor
our moral responsibility to have a genetic test that helps patient
and family to deal with long term consequences of the test which
concern with future and the meaning of life.
Case Scenario: Carrying the Gene Max and Mary are engaged. They are both 23 years old....
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