Page 70 - 20818_park-c_efi

The course of the disease is progressive, and it is customary to riage. The other type of blemish is severe enough to cause a person
estimate the stage of the illness in the patient by ranking their abil-
ity to function alongside the decrease in their cognitive abilities (i.e.
dementia):
Stage 1: The patient functions normally in his daily life, but the di-
agnosis has already been made. The patient can work at his profession
at the same level he did in the past.
Stage 2: The patient’s work is at a lower level than normal, but he
can still do the functions of of daily living.
Stage 3: He cannot work anymore and needs help with housework
and handling financial issues, but daily living continues mostly as
normal.
Stage 4: The patient becomes very dependent on those around
him, but can remain with the family.
Stage 5: The patient is completely dependent and requires help in
all activities of daily living. He frequently requires hospitalization.
There is no cure for this disorder. The average lifespan of patients,
after the diagnosis is made, is about seventeen years. Often the initial
manifestations of the disease are reflected in personality changes, a
decline in starting and maintaining social ties, periods of depression,
and more… all of which precede the diagnosis of the illness by a few
years. (The most frequent causes of death are cardiosclerotic or pneu-
monia.)
Prof. S. Miklah, Geneticist
1 AnsweR to Question 1
It seems to me that we are obligated to inform the sons who have
reached adulthood and are in the midst of finding a spouse. They,
in turn, are obligated to tell a prospective spouse about their father’s
illness and its hereditary nature. However, one should not cause those
sons who are not yet of marriageable age undue pain by informing
them before it is necessary. I will explain this further:
A person who is sick with a serious illness is obligated to tell a
potential spouse about his illness for two reasons: 1) So that he does
56 1 Medical-HalacHic Responsa of Rav ZilbeRstein
to seek a divorce once married. The blemish referred to in Sefer Chas-
sidim was probably the latter kind. This severe type of blemish can
invalidate the marriage. The blemish Rav Yehudah was dealing with
can be classified as the former kind. Although most Jewish women
would not initially marry the child of a gentile father, once married,
they are likely to accept the situation and not to seek a divorce. This
type of blemish would not invalidate the marriage and therefore, one
is not obligated to reveal it beforehand.
In view of the above, it is clear that hemophilia is not as severe a
deficiency as the two previous cases. While most people would seek
to leave a marriage so as not to bring Down’s syndrome or mentally
retarded children, who may lose their minds and take their own lives,
into the world, hemophilia, on the other hand, is not a danger to life.
The patient can live a long and happy life, injecting his medications
when necessary.
Therefore, the physician should try to convince the parents that as
an act of piety, they should reveal the information to the brothers. It
is also proper to reveal the information to those thinking of marrying
into the family. If the parents do not do so, the physician is not ob-
ligated to say anything, and the parents probably did not violate the
prohibition of deception. This requires further study.
1 SuMMaRy and Conclusions
1. The physician should tell the carrier and ask him to tell his
spouse the truth.
2. The physician should convince the carrier of the gene to tell his
relatives who are also carriers.
3. Hemophilia is a milder disease and does not endanger life. It
is nonetheless proper to tell those who are about to marry into
the family. If the parents do not tell them, the physician is not
obligated to do so.
Hereditary Defects 2 77