DILEMMA OVER CURELESS HUNTINGTON’S DISEASE
One of the rarest and most fatal diseases is the Huntington’s disease (HD) which was
discovered by, obviously, George Huntington, back in the 18th century. It is a disorder in brain
which causes loss of cognition, emotional problems and uncontrolled movements. (NIH,
“Huntington Disease”; HDSA, “What is Huntington’s Disease?”) It is a very deadly disease
since there are no cures present for recovery. And another aspect is that it is inherited. And
that carries some problems along with it.
Jonathan is diagnosed with Huntington’s disease and he has a daughter, Sarah, to whom he
does not want to reveal his disease. But his genetic counselor, Karen, thinks the opposite.
Jonathan’s unwillingness is caused by the inheritance of the Huntington’s disease and the idea
of not to upset his daughter. Inheritance is a matter of debate since Sarah has a 50%
possibility to have the disease. (HDYO, “Having Children”) This brings some ethical
questions and dilemmas to mind. First, I want to present some arguments in favor of Jonathan.
He wants the best for Sarah and does not want to upset his daughter, both with the fact that he
has a fatal disease and the possibility that Sarah may have inherited the disease. Not wanting
to upset his daughter is what makes Jonathan want to hide his disease from Sarah.
Karen, also, has good reasons to try to convince Jonathan and reveal the disease to Sarah.
According to her, as Jonathan’s daughter, Sarah has the right to know about her father. And it
is Jonathan’s duty to inform his daughter about himself and Sarah’s future risks. Sarah should
be informed about her 50% possibility of having HD. She thinks it would be wrong if the disease
were kept secret. So, Karen’s main argument is that Sarah has the right to learn about his father
and should be told about it.
Of these two contrary arguments, Jonathan’s argument should be paid attention to, I think. First
of all, he is right to think about Sarah and to try not to upset her. She may have mental
breakdowns after she learns this. If she has the disease, this would ruin her life. Maybe, if
Jonathan was diagnosed with it when Sarah was a child, Sarah would have been told about the
disease and grow up getting used to the idea. But she is 25 now and she should not be informed
about it. She has the right to live her life peacefully and without such a stress caused by HD.
Being informed would not do any better since the disease has no cure.
Because of these arguments, Sarah should not be told about her father’s HD diagnosis since it
would upset her and lead to undesirable consequences, about her mental and emotional state.
The matter would be debated if there were a cure for the disease but there is not and the
revealing has no point. Jonathan should insist on his arguments and hide his disease from Sarah
if he cares about his daughter.
BIBLIOGRAPHY
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“Huntington Disease - Genetics Home Reference - NIH.” U.S. National Library of Medicine,
National Institutes of Health, ghr.nlm.nih.gov/condition/huntington-disease.
“What Is Huntington's Disease?” HDSA, hdsa.org/what-is-hd/.
“Having
Children.”
Huntington's
Disease
Youth
Organization,
HDYO,
en.hdyo.org/pro/articles/45.
“Huntington's Disease.” Alzheimer's Association, www.alz.org/alzheimers-dementia/what-isdementia/types-of-dementia/huntington-s-disease.