|
|
|
Interactive Case
for October-November, 2000
You are a genetics counselor, that is, someone who helps people
understand information about their genetic makeup. A young couple
comes to you for advice about their three year old son. They tell
you that the boy's grandmother recently died from Huntington's
disease, which is caused by a specific genetic variation. Anyone
who has the variation eventually develops the disease although
it usually starts when the person is in their late 30's or 40's.
The rate of progression of the symptoms varies, and there are
no known ways of preventing or curing the disease; it is always
fatal. The father also has the genetic variation associated with
Huntington's but has not yet developed any disease symptoms. Now,
he wants to know about his son. He tells you, "It would help
us plan for the future if we knew whether or not he will eventually
get the disease. I want to get him tested." The mother responds:
"I don't. I don't want to know." What do you advise
this couple? What are the important ethical issues?
Dear Students,
Thank you for your responses to the ethics discussion case
for October/November 2000. We received 94 responses representing
14 schools. Your answers were very thoughtful, and you raised
important points about the situation.
More that half of you (51 responses) would advise these parents
to go ahead and test their child now. Of these, some said not
to tell the child, and others said only to tell the father. Another
large group of students (15 responses) felt that it would be all
right to test the child but only if both parents agreed. Finally,
the rest of you (28 students) would not do the test at this time
arguing in some cases that you thought the child should make his
own decision. These results are summarized in the table below.
Keep reading and you will find faculty comments regarding this
case. As you will see, all three of the professional genetics
counselors who read this case reached the same conclusions.
Professional Response #1
Deciding whether to test this child depends on 1) potential
benefits and harms of the test, 2) the decision-making capacity
of the child, and 3) the counselor's duty to the best interests
of the child.
The primary justification for any medical procedure including
genetic testing is medical benefit. There is no medical benefit
to testing a 3-year old child for Huntington disease because there
is no treatment. If the child were showing symptoms of the condition,
or if an immediate treatment were available, then testing would
be called for. A second justification might be psychological benefit.
In this case, however, the child is too young to understand the
disease. The father might benefit psychologically from having
the knowledge regarding his son, but this is not the same as psychological
benefit to the child.
At age three years, a child does not have decision making ability
so the parents have to make decisions for him. Nevertheless, the
patient is the child, not the father. The counselor's first duty
is to the best interests of the child. Also, even though the child
cannot make decisions, he still has individual rights. As he grows
older, the boy's decision making capacity will increase and at
some point he will be able to participate in the decision about
Huntington's Disease testing.
The parents' disagreement is another reason that testing should
not be done. The father's rights are not more important than the
mother's simply because the father has Huntington's Disease. On
the other hand, deferring the test is not meant to take the mother's
side. Testing can still be done in the future. In the absence
of agreement between the parents, testing will create additional
psychological stress on the family regardless of the outcome.
Professional Response #2
This ethical issues in this case are commonly encountered in
the genetic counseling field today.
Some of the guiding principles important in this case are respect
for autonomy, confidentiality, beneficence, and informed consent.
Autonomy means that we should respect an individual's right to
make his own decisions such as whether or not to have a genetic
test. Confidentiality means that everyone has the right to have
information about them remain confidential. Beneficence means
that we should strive to do good for people. And informed consent
means that a person needs to understand all of the pros and cons
of a medical decision before he or she makes a choice.
Why might someone want to know if they have inherited something
as devastating as Huntington disease? Some things that people
in this situation have expressed are:
They just need to know because they just can't stand not knowing.
They want to make financial and other plans for the future.
They want to know if they should have children.
They want to know if their children should be worried about this.
However, many people have expressed many reasons for not wanting
to be tested:
They feel they may become depressed and develop poor self esteem
if they get bad news.
They think other people will treat them differently.
They may be discriminated against.
They would rather live thinking that there is a chance that they
did not inherit the disease.
In this case, the person we are proposing to test is the child.
The child is the patient. A parent may have reasons to want him
tested, but we have to look at the testing from the boy's point
of view. Clearly a boy of three cannot make up his mind about
something like this test; he cannot give informed consent If his
parents have him tested, then the boy will not have the ability
to choose for himself whether he wants his genetic information
to be known. Once he has been tested, the child will have no control
over who knows the results.
Most important of all, we have to ask if we are going to do
this child any good by testing him since there is no treatment
that can be offered to him. Major genetics and neurology organizations
around the world have said that children should not undergo genetic
testing unless there is some medical benefit.
The counselor should sit down with the parents and help them
understand these complicated ideas about what is in the best interest
of the child. Hopefully, the parents will be able to come to their
own conclusion that testing the child is taking away that extremely
important option from him, and that the child himself should be
allowed to make the decision to be tested or not when he is older.
Professional Response #3
The counselor should spend a great deal of time trying to understand
the concerns of each parent and the reasons for their differing
conclusions about testing their son. What fears underlie their
questions? What impact has Huntington's Disease had on each of
their lives that shapes their concerns? I have no doubt that they
each have nothing but the best in mind for their son, and it would
be helpful for them to each hear the viewpoints of the other.
While the counselor should have respect for the parents' views,
the overriding concern is the well-being of the child. Since Huntington's
Disease is not treatable at this time, there is no medical benefit
to knowing gene status at an early age. The promise of a potential
cure in the future does not equal the need to test now. Testing
can easily be done at such time that a beneficial intervention
becomes available.
There are potential harmful effects of knowing at a young age
of impending significant illness. Most significantly these would
be of a psychological nature for the child and for family relationships,
but could also include issues of employment or insurance discrimination.
Instead of testing, the child should be informed as he grows
up that his grandmother died of Huntington's Disease and should
be given honest information as he sees his father develop symptoms
in the next few years. In this way the child will come to know
that he is "at risk" (50%) for developing the disease
in his adult life. Testing the child when he is still so young
removes from him the possibility of not knowing later - thus interfering
with his own autonomy when he grows to adulthood.
More Reading
If you want to read more, guidelines for presymptomatic genetic
testing (testing before disease symptoms appear) of children and
adolescents have been published by The American Society of Human
Genetics and The American College of Medical Genetics and can
be found on the web at: http://www.faseb.org/genetics/ashg/policy/pol-13.htm
Student Comments:
November 29, 2000
I believe that the mother of this child should know whether he
has the diease or not. I would really try to convince her to know
the results of the test. I also think it would be good for her
to know about his future health. I would also go ahead and do
the test for the father. Then I would hopefully think that both
parents would want to know the results.
Crystal, 11th grade
Health Science Technology
Hallsville High School
November 29, 2000
I believe that the parents of this child should come to a mutual
agreement in which both parents are equally benefited. I suggest
that the father be told and the mother not. First, however, I
believe that the parents should be told so that they will be prepared
if the boy really does have Huntington's disease.
Robert
Health Science Technology
Hallsville High School
November 20, 2000
I think that in this case I would ask the parents to discuss it
and try to come to a mutual decision. If that is not possible,
I think that I would tell the father but not tell the mother and
let them do what they will with the information.
Samantha, 11th grade
Health Science Technology
North Lamar High School
November 20, 2000
The father wants to know if his three year old son has Huntington's
Disease but the mother doesn't. I would test the child for the
disease and tell the father the results outside the mother's presence.
If the father tells the mother the results, despite her wishes,
then that is something they'll have to deal with together. I feel
that by doing it this way, I would be respecting both the father's
and the mother's wishes and maintaining the boundaries of the
law. Anything that goes on beyond that is out of my hands.
R., 12th grade
Health Science Technology
North Lamar High School
November 20, 2000
If I were counseling the parents , I would try to convince the
mother that she should know. I can understand why she wouldn't
want to know, because maybe she thinks that all she is going to
think about for thirty years or until the symptoms occur, but
she would probably regret not knowing.
Jenna, 11th grade
Health Science Technology
North Lamar High School
November 20, 2000
I would get consent from the father for taking some test and after
I received the results I would call the father and schedule an
appointment to tell him the results. The reason I would do it
this way is because you only need one of the parents to give you
permission to do a test and if the mom happened to sue it would
be a hard battle for her to win.
Heath, 11th grade
Health Science Technology
North Lamar High School
November 20, 2000
I think I would talk to the parents and try to get them to decide
on whether they do want or don't want to know. Tell them to talk
about it and take their time but try to steer them away from wanting
to know because the child is only 3 and the disease doesn't show
until your 30 or 40. It will just cause problems in the family
if he were to have it. Maybe later on in life they could find
out but they should wait a couple of years or so before they find
out.
Heather, 11th grade
Health Science Technology
North Lamar High School
Novmber 17, 2000
I think the child should be tested for his safety. The counselor
should do what he thinks is right and the child should be tested.
The mother should try to understand.
Ashley
Cumby High School
November 17, 2000
I would give all releavant information to the parents and assist
them in coming to a mutual agreement that will be in the child's
best interests. I would also advise them to wait until the child
is older and let him help make the decsion to be tested or not.
Dustin
Cumby High School
November 16, 2000
I think that the boy should be tested and the results should be
only given to the father.
Sherry
Biology
Cumby High School
November 14, 2000
I think that when the boy gets old enough that you should explain
to him about the disease and tell him that his father has it and
tell him that he may be a possible carrier and then let him decide
if he wants to know or not.
Lindsey
Cumby High School
November 14, 2000
I would let the boy decide for himself when he gets older.
Nick
Cumby High School
November 14, 2000
For my opinion, if this kind of disease was a genetic variation
disease, it will pass from generation to generation. There are
no escaping, you either have the symptoms now or later. If the
father has this disease, but haven't developed the symptoms yet,
he will get them later. If they want to know whether their son
has this disease, they need to get their son tested to see if
he was exposed or not. You have to do what's best for your child,
even though there isn't a way to prevent or cure it. I think both
the father and the child need to do what's best for them.
Uyen
November 14, 2000
I think it is a great idea for the three year old boy to test
for Huntington's disease. Although this disease is presently incurable,
but perhaps somewhere down this boy's life line scientists and
doctors might find the cure. Knowing that he actually contracted
the disease will give him a better chance of surviving it, because
most diseases at their primitive stage are easier to diagnose,
the same might be applicable to Huntington's disease. Beside it
is a possibility that he will not contract the disease at all.
Knowing the truth isn't a bad thing.
Teddy
AP Biology
Sam Houston High School
November 14, 2000
"Mr. and Mrs. Hughes, it is to my understanding that you
come here today to seek my counseling on the issue of whether
or not Charles should be tested for any variation associated with
Huntington's disease. It also states here that you, Mr. Hughes,
supports the genetic testing. However, your wife seems to disagree
with you on this issue. First of all, I would like to comment
that Mrs. Hughes, you are a little bit nebulous with your answer.
You say that you do not want to know, yet you do not state the
reason for your standing on the issue as your husband does. Secondly,
I want you both to know that I strongly believe in an individual's
right to make his own decision. I think that it is unethical to
make an important decision like this without that person's consent.
It is obvious Charles is incapable of making this life altering
decision right now, so I suggest that you both wait until Charles
is old enough to make his own choice. In fact, I think the testing
should be delayed until Charles is an adult himself. Mr. Hughes,
you say that knowing the result will help you plan out your son's
future. This does not make sense, because the disease will not
develop until Charles is in his 30's or 40's. He is then already
an adult. Whether you know it now or not should not in any way
affect your plans for your son, while he is still in your custody.
Are you saying that if the test shows up positive, you would discourage
your son from going to college or setting high goals for himself
because he is going to die anyway? It is also to my knowledge
that Charles's grandmother has just passed away from Huntington's
disease. I am making the assumption that she is at least in her
late 60's. If the disease is passed on to Charles, he still has
half of his life in front of him. Depending on whether or not
he pursues a healthy and active lifestyle, he really has nothing
to worry about. I encourage you both to delay the testing and
wait until Charles is able to make the decision for himself, because
after all this is about him. You would not want to do the testing
now and have him resent you for it later. It is his decision,
and it is for him to choose, when he is capabled of doing so."
Huong, 12th grade
Biology II
Sam Houston High School
November 14, 2000
I am a genetics counselor trying to give advice to a young couple
who wants advice about their three year old son. The boy's grandmother
had recently died from Huntington's disease and the father has
the genetic variation associated with Huntington's but has not
yet developed any symptoms. The father wants to know if his son
will get the disease, but the mother doesn't. What I would do
is to get the boy tested and see whether he will or will not get
Huntington's disease. I know I'll be putting myself in a jam,
since the father wants to know, but the mother is too scared to
get him tested. It is their right to know and I don't believe
that I should deny them that right. Whether I tell them or not,
they'll have to eventually find out about their son. My opinion
is that telling them is the best thing to do. The mother will
have to come to the realization that not everything she hear is
going to be good, and she can't just learn what she wants to know.
Phong, 12th grade
Biology II
Sam Houston High School
November 14, 2000
I am a genetic advisor and a couple came in and asked for advice
on their son's future because their grandmother just died from
Huntington's disease. The father has a variation of the symptom
but has not yet been diagnose with the disease. The father want
to know if his son is going to get it, but at the same time the
mother do not wish to know. I think it is ethically right not
to tell either one of them, because if you were to tell the father
that is just like you telling the mother too, for she would have
got the bad new from the expression of the father. This would
be the same as telling the mother.
Duy, 12th grade
Biology
Sam Houston High School
November 14, 2000
Whether to posses the knowledge of their child's fate is an extremely
difficult decision for the couple. The husband would like to know
to better prepare himself and his son for the future at hand.
The wife, however, knowing that the genetic disease is always
fatal, does not want to know that her son will not live a full
life. I understand why the wife fears the knowledge. She may be
scared that her son is much too young to learn of the situation
at hand. But the father has the right to know his son's future.
Living with the disease may not have an effect now, but refusing
to know just impends their son's future. The son has the ultimate
right to know, and as he grows older he will certainly desire
this knowledge. The future may even give way to new innovations
in that field of genetics, and will be able to cure the son. Basically
my advice to the couple would be to test the child. I would suggest
not to tell the son until he is older and when they are ready.
In this case, going without knowledge is immoral for the family,
the son, and their future.
V.C., 12th grade
AP Biology II
Sam Houston High School
November 14, 2000
As a genetics counselor, I would strongly advise this young couple
to have their son tested for Huntingtons's disease. Although the
father has the genetic variation associated with Huntington's,
the son has a 50/50 chance of actually being diagnosed for the
disease. Therefore, the son may not have the disease at all, but
we could never know unless he was tested. Even if the son does
develop Huntington's, symptoms are usually not apparent until
the late 30's or 40's. The child is only three years of age at
the moment, thus, the family is still capable of living a harmonious
life together until his time has come.
MN
AP Biology II
Sam Houston High School
November 14, 2000
As a genetics counselor, I would definitely recommend the couple
to have their child tested, but I agree with the mother so my
answer will be biased. If I did not recommend the test, I would
not be a very good genetics counselor since I would be putting
genetics out of business. Since I am being forced to be one, the
best advice I can give is let the child decide when he is mature.
Everyone on this world should have the right to choose their own
path in life. Since the disease does not develop until late 30's
or 40's. The father is having a find life with the genetic variation.
It will not hurt his childhood. It will hurt his childhood if
he does not understand the disease and the consequences. The time
to have the test is the time the child is ready. They also have
to consider the emotions expressed by the matured child when his
father starts to show symptoms, but they have the decision of
when he is ready.
Lochness, 12th grade
AP Biology
Sam Houston High School
November 14, 2000
As a genetics counselor, I would advise the parents to have their
son tested. For the many reasons that he would have the possibility
of living a normal life and maybe also saving the lives of others.
If he gets tested and he tests positive then in his later years
he has the choice of taking the risk and having kids and spreading
the disease to them or not. But who knows, 30-40 years from now
the disease may have a cure to it or a drug that can stop but
not cure the disease from getting any worse. Do keep in consideration
that the child is only 3 years old at this time.
Khanh
AP Biology II
Sam Houston High School
November 14, 2000
If I was the counselor, I would advise the couple to take the
test. Because it is better to know now then be sorry later. Also
if the boy do have the symptoms of having the Huntington's disease,
it's not going to cure him by hiding it. I would tell the couple
that if you take the test now, they would have less to worry about
each day of their life. Even if the boy test is positive, they
can have some form of process that can slow down the disease and
maybe later medicine might improve and cure the disease. The point
is you can't change the fate of a person by hiding the truth,
rather you can face the truth. You can try to help yourself and
maybe there is always room for a miracle to happen.
Jimmy
Sam Houston High
November 14, 2000
As a genetics counselor, I believe that the child should be tested
because the disease can be pervented from getting any worse or
maybe to find so later in the future when he decides to have kids
he can prevent it from spreading. Maybe 30 to 40 years from now
there might be a way to cure it. One nevers knows what is held
in the future. Do keep in mind that the boy is only 3 years old.
He still has a long time and in that span of time there could
be a lot that is going on in the medical field that would develop
a cure or some way to stop it from progressing. So just to be
safe, the mother should have the child tested.
Tu
AP Biology
Sam Houston High School
November 13, 2000
The ethical issues that must be considered is the question of
"playing God". Genetic coding and technology has put
science and medicine in a position where we can predict and even
alter future diseases by examining ones genetic code. Even though
we know that this child has a high chance of procuring this disease
in his future, it is still part of his life. Considering that
the rate of progression is relatively slow, with symptoms not
usually occurring until one's late 30's or 40's, and that his
GRANDMOTHER recently died from it, even if the boy tests positive
for this disease his quality of life will not be drastically altered
by it. He may still have children if he chooses to (which raises
another ethical problem) since his father has this disease, and
may live a normal life until the symptoms begin to develop. Therefore,
this couple should get their child tested just to make sure if
he has this disease. After that, they may rest easily because
he will live a normal life for many years until fate taps him
on the shoulder and tells him his time has come.
TNL, 12th grade
AP Biology II
Sam Houston High School
November 13, 2000
The saying, "Better Safe then Sorry" applies to this
story very much so. As a genetic counselor, I believe the child
should be tested. There might be no known ways of preventing or
curing the disease now, but do keep in mind that the symptoms
of the disease starts in the late 30's or 40's. The child is only
three now. Technology is the key to every answer. What makes you
think 30 years from now those doctors or scientist won't find
some way to stop that disease from progressing? Always keep in
mind, "If there is a will, there's a way". Therefore,
the mother should have her child tested because who knows what
technology has in store for the future. For example, AIDS, a disease
that most people thought there would be no hope for. There might
not be a definate cure for it, technolgy has lead to medicine
that can control it from progressing in the human body. There
might not be a cure now for the Huntington's disease, but in the
near future there will be. The mom doesn't know for sure it's
incurable.
Thuy, 12th grade
AP Biology
Sam Houston High School
November 13, 2000
As a genetic counselor, I would advise the parents to go for the
test. I would explain to them that they should always put their
son's best health interest before all else. If their son knew
of the disease, he will better himself for future problems and
obstacles. The ethical issue is whether or not the parents should
desprive their son's right to know of the fatal disease. Although
the disease is terminal, prepareness for it could mean life or
death.
Nhan, 12th grade
AP Biology II
Sam Houston High School
November 13, 2000
As a genetic counselor I would advise both parents to consider
getting their son tested for Huntington’s disease. It will
be a great thing to test for the disease now. Yet, both parents
does not know that their son will eventually show symptoms of
the disease. And besides their son has the right to know about
the condition of the disease. Later in life the parents can expect
their son to be happy because of early testing and telling him
the truth that he has the disease. With the knowledge of the disease
their son can live happily without surprising testament by his
parents that he have Huntington’s Disease at the last minutes.
Nicky, Sr
November 2, 2000
In the case of the couple who the father wanted to know and the
mother did not want to know about their son having the Huntington's
disease, I would like to give you my input. What I would say to
that couple would be this:
Dear Mr.and Mrs.Smith(ex.) this is a very tough situation in
which you are in. This takes a lot of time to think about. This
is something that you should know, but not your son, because he
will grow up knowing that one day he is going to get this disease
and be sick then eventually die from it. But this is only if he
has this disease in his genes. If he doesn't, then you won't have
to worry about him getting this disease. You might even be able
to use it as a story to tell your son. If you don't know, when
he is older he probably won't know what to do if you didn't know
ahead of time. If you went ahead and tested him, I could help
you start looking for good doctors and try to find a cure before
the disease develops. But this is your decision. If you want to
take some time to think about it, I will be waiting for your call.
But remember one thing, this is very important for your sake and
also the baby's.
Pedro Jr., 9th grade
Honors Biology
Sam Houston High School
November 2, 2000
Regarding whether the couple should or should not, I say they
should proceed with the testing for the Huntington disease. Why?
If they don't and keep it a secret for a while the child would
be kind of shocked when he's a teen. He may one day have a child
(without the parents knowing) and pass the disease to the baby.
So the parents should have their child tested right now to see
the result. Rather be safe then sorry.
Tom, 9th grade
Sam Houston High School
November 2, 2000
I think the child should be test to see if he have the Huntington's
disease or not. In my opinion I think this way because the parents
could plan what to do and not to be very worry and wondering if
their son have the disease. Without the test the parents don't
know if the child have the disease not, then they just let everything
go normally. If the parents know that the child have the disease,
then they could propose him to do the thing he should do or the
thing he should not do; for example, not to marry anyone. The
Huntington's disease can pass from one person to another, so if
the parents know that the child have the disease, then they could
preventing it from spreading to others. Don't let the child know
if he have the disease because he will feel differently and ruin
his purpose of life. Help him to enjoy his life.
Phung, 8th grade
Pre-AP Biology
Sam Houston High School
November 1, 2000
I don't think that the father should be able to know about his
son, because it would only make it harder for the family if he
knows he will get the disease as he grows older. Not only will
the father have to deal with knowing and not being able to tell
his wife, he will eventually have to tell his son. If he will
not get the disease, they would eventually find that out anyway.
As for planning for the future, I don't believe that it would
effect anything if they knew or not. Their son should be able
to live a long productive life even if he is going to get the
disease some day. I would advise them to make him aware of the
posibilities of one day developing the disease, but they should
continue to treat him as a normal child. They should go ahead
and plan for college as if they knew he would go for sure. If
the symptomes don't come until his 30's or 40's, he should be
able to live life just fine until then.
Brandi, 12th grade
Anatomy & Physiology
Bastrop High School
November 1, 2000
It would be really horrible if you know your son would die in
his 30-40s. But do you want to risk not telling him the truth?
The truth hurts but we must all say it. I think he should go through
some tests to determine if he has the disease. This would enable
you and your son to plan ahead as the father opinioned. It is
necessary to know unless your son may get married and pass on
the genes. Which may even cause a world disaster.
Ozii, 11th grade
Biology
Sam Houston High School
November 1, 2000
I can't say that I would definitely know how to react to this
situation, since I am not a parent. From where I stand, I think
it would be a good idea for the child to get tested. The parents
can keep looking for updates in the progress of learning more
about this disease and if there are any possibilities of treating,
preventing, or even curing this disease. If the child should be
tested positive for the disease, the child has a right to know,
but that doesn't necessarily mean that the child cannot have a
happy life.
Quyen
Pre-Ap Biology
Sam Houston High School
November 1, 2000
I personally think that the child should not be tested for Huntington's
disease. The parents already know that the boy has a chance of
getting the disease, why make it harder for them? Most people
would say yes, he should be tested so they can all be prepared
for the future and not be shocked. But if they know he has a chance
of getting it, shouldn't they be prepared for it already? If they
find out that he's proven positive, it would spoil everything
and live everyday knowing their son can get Huntington's disease.
What if he gets the disease? By that time, he is old enough to
deal with it himself. If he finds out now, he would feel depressed
and ask himself what's the use of living if he know he's going
to die. It just makes people pity him, like going around asking
if he's okay or not.
C.
Pre-AP Bio
Sam Houston High School
November 1, 2000
I would advise the couple to have the child tested. I feel this
way because if they did not have the child tested, how would they
go on through life knowing that their child possibly posseses
this fatal disease. I don't know truely how I would react to this
subject, but I would like to know if MY child had a fatal disease.I
would like to know what would happen to my child so I could prepare
for the future. What if, hopefully not, but what if the child
does indeed have this disease, the tests would only show that
the disease is present in the child. Whether or not the tests
are taken, the disease would still be there. In the same way,
if it were possible that you, hopefully not but if you were exposed
to A.I.D.S., wouldn't you want to ascertain if you would test
possitive for A.I.D.S.? I would want to know. If my wife did not
want to know, then I would find out myself and not react in any
way that she would know the outcome of the tests for the disease.
If the child tested positive, I would tell them not to tell the
child untill he was around 15 years or so because then he should
be old enough to handle what he has. Telling the child while he
is still 3, is just un-heard of! He's too young to understand
and to comprehend death that he would not live a happy full life.
So go ahead, have the child tested! Hopefully by God's Grace the
child will not have this genetic disorder. Amen. But if he does,
all you can do is pray for strength, and that soon a cure will
be found.
Solomon
Pre-AP Biology
Sam Houston High School
November 1, 2000
As a genetic counsler I would advise the couple to test their
son to see if he has Huntington's disease so that they can plan
for his future and not live the rest of their life worrying about
whether or not their son will die or live. I would tell the father
first and let him tell the mother when she is ready to know the
truth. With this knowledge they can tell their son the truth as
soon as he gets old and mature enough to understand the situation
he is in. On a lighter note, if he gets tested and the results
turn out to be negative the parents can live a happy life and
not worry about their son's life. Either way, being tested would
have two results that can be worked with throughout their son's
life.
LoAn, 10th grade
Biology
Sam Houston High School
November 1, 2000
I think the parents should have the son tested just like the dad
suggested. If not, then the parents would always be worry if their
child would have the disease. For some reason that Huntington's
disease infect the child, I would advise them not tell there son.
I think no one wants to know if they would have a disease that
cannot be cure. How would they feel? But the parents could help
him make his life to be complete for a short period of time, I
also agree with what the mother was thinking. Why do you want
to take a test to know if the child have the disease or not? Like
I was saying, no one want to know if they have a disease that
cannot be prevented. Why don't they just let it go normally and
stop worry about it? I know how they feel, but if they know the
boy have the disease, they probably would be more worry than when
they're not sure if the son have the disease or not.
November 1, 2000
I think the parents should not request the test for their son.
If they did not request the test, the parents partly think that
the child would not have the disease and would not worry very
much. For example, if they have the test for the child and discover
that the child has the Huntington's disease, they probably will
feel very bad, not excepting what they have known. They won't
be able to tell their son that he have a disease that cannot be
cured because they're afraid that the son would not be happy with
his life and do something that they won't expect him to do.
November 1, 2000
Even though the parents are both concerned with their child in
two opposing ways, I would have to agree with the father. Being
the genetics counselor, I would have to explain to the mother
and father why it is best to take the tests for their child. The
main reason for the test is that if their child does indeed have
the disease, the child would be able to prepare for his life.
When he develops the characteristics of Huntington's disease,
it is extremely important that him and his family understand that
it is caused by the disease. That way they would not fret over
the involuntary actions because they do not know what is happening.
If he is diagnosed with the disease, it does not mean that he
should live his life in a different way. His parents would have
to let him enjoy every minute of life and feel positive so that
when he dies at his early age, he wouldn't feel as though he wasted
his life isolating himself from the world and obsessing over his
condition. However, it would also be very important to allow the
child to decide whether or not he wants to be tested when he is
mature and old enough to understand what kind of situation he
is dealing with.
T.
Pre-AP Biology 1st
Sam Houston High School
October 31, 2000
If a couple comes to me for advice about the dilemma concerning
their son having the Huntington's disease or not, I would advise
them to take a test. Even though it is a disaster for a mother,
I agreed with the father. Taking the test also takes the burden
off the parent's chests because they would never be happy and
would never stop being anxious until they learn the truth. Their
son is only three years old, he might not understand, he's innocent
but that doesn't means they have the right to keep him from knowing
the truth. They can't keep the secret away from him forever. He
has a lot to look forward to, a bright future awaits him but the
fact is he has a good chance of having this illness.
As for the mother, I'm too young to really understand what
it is like to be "a mother", to gave birth and nurture
another human. A human being that you care for, that you love,
that means the whole world to you, hoping that one day he'll grows
up to be someone worthwhile. Suddenly, a stranger comes up to
you and tells you that your baby is carrying a deadly disease,
that he would died in his 30's or 40's? It must feels like an
invisible hand reaching through your chest and pulls out your
heart then tears it apart. Wouldn't you rather want to know what
might happen in the future, now, than to face it unexpectedly
later? Who knows? Maybe after taking the test, he turns out to
be all right and normal. Don't give up hope yet.
A.T.
Pre-AP Biology 1st
Sam Houston High School
October 31, 2000
1. If he has the disease then you can plan his future accordingly.
He should be told about this at a later age. Right now the child
doesn't need to worry about when he is going to die. His life
shouldn't be limited to certain things because the symptoms aren't
present. He should just go through his life and enjoy it. The
parents need to discuss, when they think he is old enough to understand
his condition. Just because he is going to die, doesn't mean he
should stop going through life.
2. If he doesn't have the disease there shouldn't be much to
worry about. If he doesn't have the disease his life should be
lived normally. If he has siblings get them tested for the disease.
David
Sam Houston High School
October 30, 2000
I would advise the couple to test the child. They would find out
if the child was infected with the disease, and would be able
to make sure the child could live his life to the fullest. The
child would have at least twenty years to enjoy life. In the mean
time, science might progress to the point where they would have
a cure for it. If the boy knew all his life that he was going
to die early, then he could accept that and go on, but if he didn't
have the disease, then he could live his life normally, and his
parents wouldn't have to live with the fear that he many die soon.
Either way, the child would have some or all of his life to live
happily. It could be the parent's decision to tell the child.
J.L.S.
October 30, 2000
I think the father is right. I think they should know what is
going to happen to prepare for the future ahead. If the mother
doesn't want to know, just let the father talk to the genetics
counselor and let him find out the information. You never know,
you could find out good info. I think it's always best to know
especially if they're dealing with a fatal disease.
Wyndi, 12th grade
Sanger High School
October 30, 2000
I would advise the couple to decide on their own first before
asking for assistance. If the child is a carrier of the disease,
they have the right to know, but they also have the right not
to know. The decision must come from the both of them. When the
child comes of age, he may choose on his own. But until that point,
both parents must decide.
Ray
Sanger High School
October 30, 2000
As a counselor to the parents of this child, they need to be
made aware of the probability of his carrying the genetic variation.
Due to the certainness of the final outcome and the fact that
it rarely shows symptoms before adulthood, what would be the benefit
of testing. The child needs to be able to enjoy a normal life
as he grows but should be made aware of the genetic history of
his father and ancestors. He would have the opportunity to make
his own decision about being tested. I would advise both parents
to be just that, parents, and enjoy everyday as if it were their
last. As for the father's desire to plan for the future, that
is great. He has the knowledge he needs to do this without the
testing. Plan to raise your child into a healthy, caring and productive
adult and then let him make his own decision about testing.
Carly, 10th grade
Sanger High School
October 30, 2000
I would advise the couple to think it over and come to a conclusion
that suits both of them after looking at the good and bad of each
side. Ethical issues that they need to consider are what would
be the best for the child. Having him tested may cause him to
worry or think more about the disease. It also might change your
whole life.
Morgan, 10th grade
Sanger High School
October 30, 2000
I don't think they should test the little boy. I think they
should leave it to fate because there's not a cure for it yet.
If he was tested and the results came back positive, I think that
the family and the son would all get worried and the boy would
have to live with the fact that when he turns about 30 or 40,
he is going to get a disease and die.
Candace, 10th grade
Sanger High School
October 30, 2000
I would tell them that they probably need to know about their
son. They should know if he has the disease so they can plan for
the future. They won't be surprised in the future if they find
out now.
Jodi, 11th grade
Sanger High School
October 30, 2000
1. Seek help together on whether or not to test the child.
2. Explain that your job is to help people understand information
about their genetic make-up not to recommend testing for their
son.
3. Offer the father your services in understanding his genetic
make-up.
4. Offer the mother information on Huntington's disease.
5. Offer any other assistance you can offer.
6. Don't influence people's decision.
7. Don't take sides, remain objective.
Kasey, 10th grade
Sanger High School
October 30, 2000
I think that they should not find out whether or not he has
the gene. If the disease is fatal and there is no way of preventing
or curing the disease, then why know. The father says that if
he knew, it would help them plan for the future. What is he trying
to say? Why would he want or need to know when the son is only
3 years old? I think the mother is the one in the right because
she doesn't want to know.
Brittany, 10th grade
Sanger High School
October 30, 2000
In this situation, I would want to have the consent of both parents.
This is a complicated dilemma, and to make an educated decision
in this case, you must think of the factors involved. The father
wants to test his son, but the mother does not. If the father
wants to find out about whether or not his son has the disease,
he needs to work out an agreement with his wife. I would choose
not to test otherwise because of the consequences that may ensue.
Allison, 12th grade
Anatomy & Physiology
Azle High School
October 30, 2000
The main ethical issue of the matter is the agreement between
both parties of the couple, they first should decide as a whole
whether they want to know or not. Personally, I think that it
is best for the parents to know whether he has the disease or
not for the sake of future planning. Whether it be him having
or not having the disease, it will be easier for them to know
in advance. If he should happen to have the disease it would be
best for the family to have some sort of a counselor or pyschiatrist
for the family. They also should wait until they feel he is at
a resonable age to tell him that he has the disease. Until then,
they should encourage him to live his life to the fullest and
they should just enjoy their lives with him, even if it is short.
April
Biology
Sam Houston High School
October 30, 2000
I would like to express to the genetics counselor what I think
about this particular situation and what this person should do.
One of the choices I am considering to do is to tell the young
couple about their son’s condition and what to expect in
the near future. I think that it is an important thing to classify
and establish to the family about what is going on. If my job
was as a counselor, I would feel obligated to tell the father,
what he wants to know and not to condone his thoughts. If the
mother’s desire is not to know if her son has the genetic
variation then it is my priority to only concern her husband with
the information about their child. I assume that soon she will
want to know about her son too. Because she is a mother and if
she truly cares for her son, she would give in to the truth about
her son even if the results are bad. I would have to say to the
couple that it would be better for them to know now about their
son because in the end they will find out even if they don’t
want to recognize the situation that their son is in. I can tell
by the mother’s decision, that she is very naive about what
to do if her son does have the genetic variation. She demonstrates
that she doesn’t want to identify that it is true and that
it could be possible for her son to be consumed with this fatal
disease. Her husband is ready to withstand the worst to come.
He understands what is going to happen and I can see that he wants
to help his son overcome his fear of dying if there is any, at
the right time. But who knows, maybe a cure will be found and
this disease can be prevented by antibiotics . This is what I
would do if I was to come to a doctor, counselor, etc. that this
situation pertained too. I would also like to say if I was the
couple with the problem and if I was the father, I wouldn’t
want the physician's consciences to effect the details I was suppose
to be informed with about the most important thing in my life.
Denyse
Biology
October 30, 2000
I think this couple needs to consider several things including:
1. the cost of the testing
2. whether the test will be painful for their child
3. if he tests positive for this disease will they be able to
give him treatment or medicine to help the symptoms.
Since their son is only 3 years old if they found out he would
have the disease they might decide to put him in a special home
for sick kids. I don't think this would be a good idea because
he is their child and he belongs with his parents. It doesn't
say that the parents would ever tell there son if he would get
the disease. If I had the choice of knowing whether or not I would
get a terrible disease when I'm older I would not want to know
because I would always be worried thinking about it.
Ryan, 9th Grade
Physical Science
Harwood Jr. High
October 30, 2000
The advise that I would suggest would be for the parents not to
get their son tested, for Huntington's disease. The main reason
for this recommendation has to do with the psychological effect
of knowing and its effect on the people involved. For instance,
if their son had the disease, the parents would have the burden
of breaking the terrible news to their child. Once the child is
informed that he has the disease, he is faced to live the rest
of his life knowing he would be deprived of a full life. This
could have serious negative effects. Depression may set in, causing
the boy to lose all perception of the meaning of his life. He
could think, what is the point of aiming for anything when you
know that you will not live to see the fruits of your labor. There
will always be the anxiety of dying early in the back of his mind,
therefore making it very hard for him to live a normal life. This
is also were the ethics issue comes in. The main question comes
back to whether it is fair for the child to be robbed of the precious
years he could have enjoyed. If he never knew whether or not he
had the disease, he could live with hope. Hope and anticipation
are key motivators in life. In conclusion, I believe that not
knowing is the best way to go, holding the child's best interest
at hand.
Raj, 9th grade
Honors Biology
Sam Houston High School
October 30, 2000
I believe that the young boy should be able to make his own opinion
on the subject. Since he is 3 years old, he should grow up living
a normal life but when he is mature enough or old enough, his
parents should inform him of the possiblity that he may have Huntington's
disease. Then he should make his choice of whether he wants to
know how his life is going to turn out. Plus, the fact that he
may die at an early age should not help the parents plan his future.
His life should not be effected because of the fact that he might
get the disease. If he tests positive for the disease, he should
still live his life like any normal child, adolesent, or adult.
My, 9th Grade
Pre-Ap Biology
Sam Houston High School
October 27, 2000
I would advise the parents to give their child the test. If the
father and the grandmother both have the disease the chances are
that so does their child. It would probably be a better idea to
get an outlook on their childs life and to explain to the kid
when he is born that he does have the disease.
Mike
Cumby High School
October 27, 2000
I would advise you take all precautions before deciding whether
to test the child. I think that the child should be able to grow
up a normal life and when he is old enough, tell him the situation,
and then let him make the decision.
John
Cumby High School
October 27, 2000
I would advise the parents of this child to wait until the child
is old enough to decide himself mainly for the reasons that the
child should make his own decision when it could tell him whether
he's going to die or not. Another reason is there is no cure,
so it does the parents no good to know this early because there
is nothing they can do but wonder why and be sad. This is what
I'd do in this position.
Ron
Cumby High School
October 27, 2000
I believe that the parents should work together along this situation.
But for my opinion I think that they both should go along with
the testing for their son's sake, just in case he does have the
symptoms of this disease. So that they will be able to know what
to do when the symptoms get worse! And it would probably help
them financially and mentally, so they will know what their in
for when they have to go to the doctor.
Amberly, 10th grade
Navasota High School
October 27, 2000
In my opinion he should be tested for the disease. If he is tested
then he will probably have a better chance of living if he does
have the disease because they will give him medicine for the disease.
If they don't test him, then he could have it and die sooner than
he would if they knew. But if he is tested he may not even have
the disease. It would be better to know, than to not know.
Trish, 10th grade
Navasota High School
October 27, 2000
I believe that the parents have a very difficult decision to make.
They need to ask the son if he wants to know if he has Huntington.
I think they need to find out soon if he has it. It may be better
for the son's future and they will be prepared for what might
happen.
Jillian, 10th grade
Biology
October 27, 2000
I believe that those parents have a very difficult dicision to
make. Determining their child's fate is almost unnatural. As a
person grows older, the fact that you will die comes easier to
accept. I believe that they shouldn't take the test while their
child is so young. If the child is showing no indications that
he is in harm, than there is no need for any tests. As the boy
grows older and he comes to understand life better then perhaps
he can make the choice to take the test to see whether or not
he has the disease. If the parents were to have the test taken
and the results are not good, the child may be missing out on
the chance to live a normal life. If I were put into the situation
that those people were put into I wouldn't have the test taken.
Rachel
Biology
Navasota High School
October 27, 2000
After reading the situation, I have concluded that there really
is no earth-shattering ethical obligation on anyone's part. As
a genetics counselor, I have a responsibility to alert my patients
to any harm that may threaten them. I would advise the parents
to run the test on their child to find out if he has the genetic
variation for Huntington's Disease. I have many reasons for doing
so, but here are two.
1) The father is right, even though his "planning for
the future" might seem vain. I have noticed that people have
highly valued their childhood. Many don't get a happy and memorable
one. Testing the child would not, in any way take away from his
childhood because a) if he does have the genetic variation, the
father can ensure him a good childhood. and b) if he doesn't have
the variation, then the father who does have it, can make sure
that his child spends a sufficient amount of time with him (paternal
relationship).
2) The child is a CHILD. Let's remind ourselves that he WON'T
have any symptoms until he is in his 30's or 40's. As previously
stated, the child will lead a normal and happy childhood, either
based on his having the disorder or his father's. Now, the mother
seems to be scared. Who wouldn't? But I think that she, deep down,
knows that her son has the disorder (even though he might not).
But, her fears should not prevent the father and ,eventually,
the child from the truth. I think that the mother doesn't realize
that we are talking about her SON. He might be diagnosed with
a shorter life, but nevertheless, a LIFE.
As a genetic specialist, I see no harm in testing this child
for the genetic variation. Either he has it or he doesn't. Nothing
can be done about it (maybe in the future, though). If the child
has the disorder, his parents will be ready to give the best of
life to him. If he doesn't, then I belive that the parents will
still do the same because of the father's situation. So, I believe
that the parents should not just test their child, but MUST do
it.
Arjun, 10th grade
AP Biology
Dunbar High School
October 27, 2000
In life there are always two choices, always forks in the road.
Everyday we make choices, some monumental, others minuscule. For
the parents of that genetically mysterious child, they must make
a choice also. Either they can "test" for the child
and determine his future at the ripe age of three, or they can
leave aside till he is old enough to make a decision on his own.
The latter, is my advice to them. Ignorance to some extent is
bliss. If the parents do run the tests, then they will lead lives
of hiding, and aberrancy, in the way that they treat their child.
However, if they do not run the tests, then the parents and the
child can lead lives of normalcy, yet still with dubious minds.
To me it seems, that decisions like these lie in the hands of
the direct victim, which is the child. This is the ethical issue
in this case. Also, it would be better off for the child, if the
parents wait to see if the father has the disease. This in turn
will decrease the monitory debt they will be in if the tests are
conducted. So, if looked at closely, conducting the tests will
only bring suffrage and sheltered life to the child. It is just
better to wait and see what the future holds. Motherly instinct
always prevails.
Chirag, 11th grade
Dunbar High School
October 27, 2000
In the case presented, since he is not asked, the genetic counselor
should not get involved in the ethics, but rather, present to
the parents the facts on an objective basis. However, if he were
to make a suggestion to the parents, then he should tell them
to test the child. This suggestion could be made, however, assuming
that the parents would be unbiased towards the results, which
they should be since, even if the kid is tested positive for the
disease, during the time that he is under the parents' custody,
he will not be affected by the disease in any way. The father
makes the statement that it would "help [them] plan for the
future if [they] knew whether or not he will eventually get the
disease." I do not see how he can make such a statement since
they will certainly never be planning for the future of the child
once he reaches an age of 30-40. This statement by the father
possibly shows that they may not be able to handle a positive
result to the testing in the correct manner, but if the genetic
counselor were to make it clear to them how to treat the child
in the worst possible scenario, I think that the parents may at
least try to be unbiased. The reasons for having the child tested
are obvious. Knowing the results of the test would clear up the
ambiguity of the child's future, which is much better than not
having the child tested, regardless of whether or not the child
has the disease. This may be hard to believe, but if you think
about it, once a punishment is known, it is not as scary as one
that isn't known. An example is seen from school where, if one
gets into trouble and receives detention, he or she will most
likely not mind that much. But this punishment is made much worse
when the teacher tells him or her to go to the principal's office,
because this time, what will happen in the end is not known. Other
than just knowing the child's fate, testing the child can give
valuable evidence about the disease, and possibly even lead to
a cure for it. The child won't be afflicted by the disease until
he is 30-40 years old, and in that much time, technology can be
enhanced enough to find a cure for his disease. We have already
seen how far technology can go in only 10 years, especially in
the medical field. As for being treated "differently"
by others, who said the kid or his parents have to tell anyone
he has the disease? If being left out because of a "handicap"
(although he won't have one while he is in school or college)
is a concern, then he can easily refrain himself from making his
disease public knowledge. The only concern I see in this case,
if the child is tested, is by the parents' reaction to it. The
mother chooses not to know, and ignorance is always a choice.
She does not need to see the results of the test, but the father
should certainly have a right to know his child's distant future,
although he will most likely not be able to do much about it.
Saikat, 10th Grade
A.P. Biology
Dunbar High School
October 27, 2000
I would advise the couple to get the son tested. They should tell
their son when he has grown up and is mature enough to accept
it. The mother is afraid that her son will grow up in fear of
his death, but if it were me, I would like to know. It might be
hard for the son to accept the fact at first but after a while
he will have to come to terms with it. If I knew that I would
die in my 30s, I would live my life to the fullest and be prepared
for my death. I would make peace with myself and my family and
with God (or whoever he believes in). That way I know I'll have
a better life in heaven.
October 27, 2000
I think that in the best interest of the child that the boy should
wait until he is about 18 years of age to be tested. It would
work out best for all parties involved. This would allow him adequate
time to prepare for the future.
James
Cumby High School
October 26, 2000
This is actually a simple case. There are several scenarios:
1. Either the son has the genetic anomaly that will cause the
disease, or he does not.
2. He can either be tested at this time or not.
If he does not have the disease, then it really does not matter
whether he gets tested or not. Thus, we must assume that he does
have the disease. In other words, we must assume the worst case
scenario.
1. If he is not tested then the parents are simply neglecting
their responsibility. As parents they must make sure their child
has everything available in their power in order to survive, and
lead the most fulfilling life possible. They may not be able to
cure his disease, but they can do what they can up until the child
is old enough to make his own decision. Then, at least he knows
his parents cared enough to do what they could before he was old
enough to make his own decisions. If I were that child I would
be infinitely thankful to them. The indisputable fact is, the
parents must get him tested, because it is their JOB AS PARENTS
to do so. The mother in this case is simply being selfish, by
only caring about how she feels.
2. If he is tested and the parents find out he will die eventually,
then subconsciously they may limit his life. Deep inside they
will be thinking something like, "Well, he is going to die
soon, so it really doesn't matter if. . ." I know it sounds
cruel, but I've seen it happen-- even to people who do not have
fatal diseases. When the child finds out, he may in turn adopt
his parents' mindset, especially if they do not support whole-heartedly
a more optimistic point of view. This scenario means death while
living, which in my opinion is worse than any death.
3. However if the parents decide to carry on strongly, and support
their son-- not allow self-pity to take over, and not allow frustration
to take over them; then the son is still capable of leading a
productive life-- no matter how short. Who knows, perhaps with
his efforts and support, a cure may be found that can help him
in time-- if not then others.
As a genetic counselor, I would delineate these scenarios to
the parents. Allow them to make a decision, but suggest that personally,
I would chose scenario #3.
Marisol, 10th grade
A.P. Biology
Dunbar High School
October 26, 2000
‘Death is only a part of living.’ There is nothing gained
in testing for Huntington disease in this case, except a life
full of misery and sorrow if tested positive. The child’s
life would become ruined, forever. His entire purpose for life,
and morals would totally be altered. He would probably have very
few friends and practically be secluded from everything normal
kids do. Why not live life happily, rather than worry about death
every second? That is simply torture. Kids should run around and
engage in playful activities, not sit around all day, curious
about when Death will come and take them away. Obviously, I agree
with the mother in this case. Of course, the father does have
a right to know, however, if I were making the decision between
knowing whether my child had a fatal, non-curable disease or not,
I would rather not know, for I would want my kid to live a normal,
happy life.
Amit, 10th grade
AP Biology
P.L. Dunbar High School (Fort Worth)
October 26, 2000
Each parent has the right to know as much or as little about his
or her son's genetic makeup. However, he or she cannot limit how
much the other parent knows. In this case, the mother does not
wish her son to be tested because she doesn't want to know whether
he has the variation for Huntington's. But this should not keep
the father from having their son tested and finding out about
any variations. The father mentioned, "It would help us plan
for the future if we knew whether or not he will eventually get
the disease." There isn't much to plan for -- if the son
doesn't have the variation, then the family will lead a "normal"
life; if he does have the variation, he won't show signs until
his 30's or 40's. And then, his parents will not be responsible
for him -- the planning will be up to the son. The father has
the variation for the disease -- perhaps more important than planning
for the son's future (for which the son will be responsible if
he does have the variation, since he will be an adult before symptoms
develop) is planning for the future because HE has the variation
and will develop symptoms sooner than his son. The father has
the right to have his son tested, just for his knowledge. There
is no need to plan for the future based on whether their son has
the variation. (The father, since we know he has the variation,
could participate in studies to help further research on Huntington's
disease.)
Shin, 10th grade
AP Bio
Dunbar High School (Ft. Worth)
October 26, 2000
I think that they should wait until they come to a unanimous decision;
it would be no good otherwise because someone will get upset.
The doctor couldn't just simply tell the father because he would
react to the information, whether it is good or bad. I would want
to know because it would prepare me for what will come. If they
wait, they can think it over and maybe come to a decision. They
might want to wait until their son gets mature enough and ask
him what he wants.
Jason
Pre-AP Biology 1
Sam Houston High School
October 26, 2000
In this situation, the parties involved would have to come to
some sort of agreement or compromise about getting their son tested
before any sort of decision is made. The doctor has a tough choice
to make because he has a mother who doesn't want to know, and
a father who does. The result of this testing may be good or bad,
which can result in negative consequences from the mother if it
is the latter of the two. I would choose to test the child, but
I would leave it up to the father to tell his mother the results.
Allison, 12th Grade
Anatomy & Physiology
October 26, 2000
I strongly feel that the child should get tested right away. The
doctor should explain that to the parents. They have to realize
how important this situation is. What the parents don't know could
affect their child's future. What is the difference if the child
doesn't take the test and if the child does take the test? Ask
yourself, why do people even get tested? So they can prevent the
future from happening or so they can cause a less severe output.
There are a thousand reasons that their child should take the
test. There are no reasons why he shouldn't.
Kenya, 11th grade
Health Science Technology II
Longview High School
October 26, 2000
In this particular case, the genetic counselor must not let his
own held ethics get the best of him while giving his advice and
must remain strictly professional. Even if the counselor's opinion
is held in regard, he should not have any real say on the situation.
Despite the mother's doubts on the matter, I moreso understand
why the father might want to know the fate of his son. Knowing
that he himself already has the genetic variation associated with
Huntington's Disease, a genetic disorder that leads to losing
control of one's muscles, the father wants to be knowledgeable
of his son's future and needs to know that his son won't live
his same fate. If the parents do not choose to take this critical
step in their son's future and leave things to be, then in the
30, 40 years that the parents remain unknowing of whether or not
the disease is to take effect, preventive methods could be developing
which the parents failed to acknowledged prior to the disease
being for certain (assuming the child does in fact develop Huntington's
Disease). By testing, the parents will be able to prepare financially,
but more than that, then and there they may be able to cope emotionally
(whether that is possible or not, I don't know). In fact, if the
tests are performed and they yield negative, then how big a burden
off their shoulders is that? Yet, before any good can be done,
both parties must come to a mutual agreement. The mother must
realize that fearing the outcome of the tests will only further
intensify her fear if the disease does take effect.
Vinay, 10th Grade
A.P. Biology
P.L. Dunbar High School
October 24, 2000
I think that the doctor in this case obviously has a hard decision
to make. You can't really decide on your own whether or not to
do the test because you know that in the end it is the parents
decision. I know that as a doctor I would be frustrated in that
I wouldn't know whether or not I was going to be abled to perform
the test. I think that the test should be performed for the well-being
of the child. Doing this test now may allow for treatment to be
done to lengthen the life span of the child even if he will die
from it eventually. As a parent I would like to know that my child
didn't have the disease, but it is up to the parents.
Melanee, 11th grade
WHS HOSA
October 24, 2000
Obviously the doctor in this situation is put in the middle of
this family. I, personally, would wait until the boy reached an
age that he could fully understand what was going on and make
his own decision. After all, it's him that this disease is going
to effect. I know it is the parents responsibility to take care
of him but if this disease is going to effect him when he's in
his 30's or 40's then he will be grown and on his own. So, like
I said, it should be up to the boy.
Jessica
October 24, 2000
In this case, the doctor is obviously put in a position in which
he cannot (or rather should not) answer. The father would like
to "look into the future" and alter what is already
pre-destined. The mother, on the other hand, does not want to
know and wants to leave without hearing anything from the doctor.
I, for one, must agree fully with the mother in that knowing what
the future of their child is pointless. What information is gained
will not aid in saving the child (per say) but will only inform
us that the child has the variation for Huntington's disease.
By the couple knowing the fate of this child, they are only going
to treat him differently and let the child know he is "different".
Death is a part of the cycle of life and cannot be avoided. The
ethical issue at hand is obviously not whether the doctor should
get involved here (although I feel he shouldn't) but whether modern
science should tamper and try to alter what is going to happen
anyway...especially when there is no cure. Let the kid lead a
normal life!!! Don't let this knowledge of his death alter the
way he SHOULD be treated. In conclusion, I believe that the genetic
counselor should not make the decision for the couple and should
tell them that it is a decision to be made by the couple, that
he is only there to do this if both the mother and the father
want to know what is going to happen. If the couple still persists,
I would suggest the counselor refer them to someone that can help
them make the decision.
N. Acharya, 11th grade
AP Biology
P.L. Dunbar High School (Fort Worth)
October 24, 2000
The genetic counselor has a difficult decision to make. I believe
that he/she should go ahead and advise the couple to go forth
with genetic testing. The reason for this is simple: knowing exactly
what is going on and understanding the truth is vital for success.
Having a dark cloud of uncertainty will always be detrimental.
A free mind is necessary. Plus, as the father mentioned, it is
necessary for planning. Knowing what to do always helps in any
tough situation. Moreover, the parents should look optimistically
at the issue. With all the genetic advancements made by government
and private institutes, Huntington's patients may receive treatments
to a certain degree in the next few years. The child may not even
have the disease at all. This would make not doing the genetic
testing even worse. Of course, several issues are involved. If
the child tests positive for Huntington's, his overall future
will remain bleak. But the parents should still remain optimistic
for a treatment. They may, if they desire, not even tell the child
of the situation. So at least they will know without devastating
the child himself. But the parents must realize the day of truth
for the child will come, and they must be prepared for it, or
the decision to proceed with genetic testing right now will be
nulled out.
Anik, 10th grade
AP Biology
Dunbar High School
October 24, 2000
The case in question does not seem very difficult at all to me.
While the mother may not want to know, the father still has a
right to know and his right must be supported. If the mother does
not want to know the results then she does not have to be notified
of them. Others have said, "Why test when there's nothing
you can do about it?" Well, this child has 30 or 40 years
before he is threatened. Starting now and lasting until he does
or does not show symptoms, he can participate in experimental
studies and treatments. Even if this child is never cured, several
decades of data can be invaluable to anyone studying genetic diseases.
Cosmo, 10th grade
AP Biology
Dunbar High School
October 24, 2000
This is indeed a difficult situation. I believe that you cannot
take a view of one parent over the conflicting view of the other
parent. Therefore, the immediate course of action would be to
tell the parents to make an unanimous choice before you begin
your testing. However, with the situations of the disease, I think
you should not find out now if the child carries the variation
of Huntington's disease. Since, the disease does not show up until
the person's thirties or forties, there is really no planning
for the future on the parent's part. I believe the parents should
inform the child that he might be a carrier of the disease. When
he becomes an adult, he should be the one deciding if he should
be tested. Some people would view knowing they had the variation
as a burden, losing possibly thirty years of their life. These
people would rather not know they had a deadly disease lurking
in their future and let nature take its course. On the other hand,
many people would rather want to know if they carried the variation
to better plan for their future life. In any circumstance, it
makes no immediate difference whether or not the parents know
now.
Justin
Biology II AP
Kaufman High School
October 23, 2000
At first glance, this situation is extremely hard to make a decision
about. There are many factors to put into consideration. First
of all, the father would like to know about the presence of this
disease to plan for the future. However, people that develop this
disease are usually 30 or 40 years old before they even produce
symptoms. This means that the little boy would not even be living
with his parents anymore; therefore, what planning does the father
have in mind? Since there is a possibility of the boy never contracting
the disease, test results could give the parents unnecessary fears.
Also, results of the disease testing will not provide any outcome
other than knowledge of the possibility of death. There is no
cure, control, and no stages that could be treated when first
discovered as there is with other diseases, such as cancer. The
common knowledge of this disease is only up to the parents discretion
- it will neither help nor hurt the boy in any way. Therefore,
as the counselor, the advice to the couple should be reference
to another counselor that could help them with their inability
to compromise. The couple should make a list of pros and cons
and come to an agreement before the genetic counselor can do anything.
It is not the genetic counselor's decision whether to tell the
couple or not. It is the couple's mutual decision that the counselor
must abide by. Also, informing only one party will cause problems
between the couple when the spouse figures out the situation.
Jordan, 12th grade
Anatomy & Physiology
Azle High School
October 23, 2000
In a situation where the parents don't agree such as this you
have to have them reach a unanimous decision before you can do
anything. You may want to try to tell the mother that there may
be nothing wrong with the son and this may help ease her mind.
But on the other hand you could tell her that if the test results
in her son having the disease it may help the family prepare for
the inevitable if they know. Maybe by the time her son starts
showing signs of the disease there could be a cure, but if the
son doesn't know he has the disease he can't cure it. If this
does not seem to convince her then I would recommend that they
go to counseling and try to reach a unanimous decision.
Holly, 11th grade
Anatomy
Azle High School
October 23, 2000
In this case, there are two different sides you have to take into
consideration, that of the father and the mother. Both sides have
logical and valid points; but it is not the physicians choose
to make. If I were to go ahead with the testing the mother would
feel as if she had been betrayed by both parties; but if they
chose not to go with the testing, I would feel obligated to tell
them it is always better to prepare for the future and urge them
to discuss it further. If I was in this position I would strongly
suggest that the family seek counseling, or for the parents of
the boy to set down and discuss with each other their opinion
on the matter of testing for the gene the boy probably possesses.
Both of these are simple solutions to a difficult situation. The
consent of both parents is top priority no matter how you view
this case. In any case the family still has time to decided if
they wish to go on with the procedure, or they could wait until
the boy is older and go with his decision of whether he wishes
to be tested or not.
Becca, 12th grade
Anatomy and Physiology
Azle High School
October 23, 2000
This would be a hard decision to make. I feel that the result
of the test would be of more use to the family than the 'peace
of mind' they might get from not knowing. I would take the couple
and try to explain the benefits of having the boy tested. Being
able to make preparations for the future and being certain about
the health of the child far outweigh not knowing. But when discussing
this with the parents I would make sure to keep their emotions
in mind. What made them ask now? My guess would be that the father
has just recently found out about his disorder. This, of course,
would be upsetting to him and his life's partner, and bring about
concern for their son. The father, trying to except his fate,
has begun making preparations while the mother, not wanting anymore
bad news, just wants time to cope. Luckily, unlike many other
diseases, time makes little difference in this situation. Ultimately,
I would push for the test to be taken, however I would also like
to make sure the family is emotionally stable enough to handle
any outcome.
Donovan , 12 grade
Anatomy and Physiology
Azle High School
October 23, 2000
This is a tough case. On one hand you have the father who wants
the testing done and on the other you have the mother who doesn't.
I believe that before any testing is done, there needs to be a
decision made between the parents. If the parents cannot decide
whether or not to get the testing, wait a few years and let the
child decide. Since the disease usually doesn't take effect until
the patients are between the ages of 30 and 40 years old, it will
not hurt the child to make the decision himself. Then the physician
doesn't have to worry about making any mistakes and the parents
don't have to worry about arguing.
Justin, 12th grade
Biology II
Kaufman High School
October 23, 2000
There are many factors that need to be greatly considered in this
situation. First of all, the parents need to be informed that
their son only has a fifty percent chance of inheriting this disease.
I would then explain that, more than most disorders, Huntington's
disease exacts enormous emotional, physical, social, and financial
tolls on EVERY member of the patient's family. The next thing
I would do is refer them to some type of physiological, clinical
or marital counseling to explain to them every aspect of Huntington's
disease. They need to come upon an agreement between the two of
them before any tests are done. After they decide, whatever needs
to be done, can be done accordingly.
Calli, 11th grade
Anatomy & Physiology
Azle High School
October 23, 2000
First, you need to advise the couple to come to an agreement.
In this, they should consider that they could have him tested
but only reveal the information to the father who wants to know
as long as his way of preparing does not involve telling his wife.
The mother does have the right to not know because she can't prevent
this, only prepare. She could consider that if her husband truely
wanted to find out he could and still refrain from telling her.
You should suggest to have them come back after 2 months to give
them more time to think between the two of them. You have the
responsibility, as a physician, to test him once you have consent
from one guardian.
Stephanie, 11th grade
Anatomy
Azle High School
October 20, 2000
In this situation, the first step for a physician to take is to
get an agreement reached between the opposing cases. In order
to come to a completely satisfying decision, one must analyze
the entire dilemma sequentially to reach a logical solution. If
one did go ahead and do the testing, the mother would be upset
and offended because one didn't respect her opinion. Simply put,
the first advice would be to receive the consent of both sides
to either test or not test. If the couple decides ignorance is
bliss, then both the child and the couple would live blindly until
symptoms show up, if any appear at all. If the couple decides
to do testing, the physician must reassure the couple that knowledge
overpowers all, and knowing whether or not the child has the disease
can only help them. But one must also look at the possibility
that he might not even have the disease, and also reassure the
couple that it's not a 100% possibility. The ethical issues involved
in this particular case are strong, and if the parents of the
child do not agree, it is NOT up to the physician to make the
decisions for the couple when both of them are there and could
be easily resolved with a little counseling. Time is on your side
in this instance, so use it well.
Andy, 11th grade
Anatomy & Physiology
Azle High School
October 19, 2000
I understand the mother's concern and reason for not wanting to
know if her son was going to contract the disease, but I do think
that the boy should be tested. It would be wrong for a person
to grow up not knowing that he could possibly die when he is only
30 years old or sooner. I would ask the mother to think into the
future of when her son has a wife and kids and how they would
feel if their husband/father died suddenly. I think maybe after
she saw the whole picture she will choose to do the right thing
by testing her child.
North Side High School, 9th Grade
Intro to Health Science Tech (IHST)
October 16, 2000
This is a complicated situation in which many factors are relevant.
You have to respect the wishes of all parties involved, but because
the parties are divided, the problem enlarges. One of the factors
is the actual disease, and the relevance of the father's argument.
Knowing the future may help them prepare better than being led
blindly. The mother's state of being should also be a factor.
Her emotions might be taking control of her thoughts and she might
not be thinking clearly, or, on the other hand, she could be thinking
perfectly. In this situation, I would suggest counseling of some
sort. Both parents could explore each other's reasoning, and hopefully
come to a consensus. Without their agreement I would not be able
to test the boy. While I understand the father's thinking, I would
not want to be responsible for any grievances the parents feel.
I would just hope they come to a mutual decision.
Amanda, 11th grade
Anatomy & Physiology
Azle High School
October 16, 2000
This case is not as rare as you might think. Recent developments
such as the genome project have reveled several similar genetic
aberrations associated with disease "downs syndrome"
and other similar types of genetic "cases". Recently
gene therapy has shown promise for correcting the symptoms of
these diseases. The need to know is genuine and should be researched.
Recent uses of "fetal tissue" have helped alzheimers
patients---but this provides another ethical issue
Richard
October 13, 2000
In this situation, I believe it would be wise to go ahead with
whatever tests needed to determine if the child has the disease.
In confidentiality, I would tell the father the results, then
leave the rest up to him. This way if the child has the disease,
he can prepare himself for the inevitable and take advantage of
every opportunity with his son, and if the son is free of the
disease it will give both parents peace of mind.
Tia
Azle High School
October 12, 2000
I believe the parents need to come to an agreement on whether
they want to know or not. I believe I would side with the father.
If you knew in advance you could start planning emotionally and
financially for the sitiuation.
George
Page maintained by Program
in Ethics in Science and Medicine
Last Update: December 1, 2000
