Tuesday, June 2, 2015
Case 34 on Huntington's (9June)
For this case you *must* argue a position you disagree with. On your honor! Give your best argument for the position with which you disagree the most. Use your ethical theories to help you. Respond to at least 2 of your classmates -- keep them honest and make them work to defend their positions. Good luck!
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It is ultimately a personal decision that Heather D must make as to if she wants to know if she has inherited the defective gene from her father that can cause Huntington's disease. If she does have the defective gene what would she do with that information? there is not curative treatment there are only medications to treat the symptoms. It is indeed a disease that will change the life of the person who has the disease and those that are close to that person. the symptoms of the disease are physical and psychological disorders which can be very difficult to deal with.
ReplyDeleteSince Heather is against prenatal diagnosis and her husband against abortion it does seem that if they want to have biological children that pre-implantation testing is what may be best for this couple. But then again you have to look at do you consider the embryos as living viable human beings. If so the it would be the same as selective abortion if the embryos that may have the genetic disorder. I also think that if Heather knows how many embryos have been fertilized and that some must be destroyed would also indicate that she is a carrier or would that information be kept secret. Since there are many technological advancements that can be done to help a couple have a healthy child why should that be wrong. I know that these test can be very costly and a financial burden on a couple but so can having a child with such an illness.
Donna, I agree that the embryo must first be defined as a viable human being before the husband could agree with discarding the embryos. I personally see abortion as wrongfully, discarding of human life, given by God and do not agree with it. I believe that an embryo is a human life, it may not have developed a soul/life experiences/spirit, but it is what God and nature intended for it to be, human. I know that religious argument is not generally regarded scientifically, however I believe religious and moral decisions guide us down a life path that is more respected.
DeleteDonna, I agree that the embryo must first be defined as a viable human being before the husband could agree with discarding the embryos. I personally see abortion as wrongfully, discarding of human life, given by God and do not agree with it. I believe that an embryo is a human life, it may not have developed a soul/life experiences/spirit, but it is what God and nature intended for it to be, human. I know that religious argument is not generally regarded scientifically, however I believe religious and moral decisions guide us down a life path that is more respected.
DeleteI agree that pre- implantation testing would be a good lotion for this couple , but more information would be needed in regards to her husbands beliefs regarding abortion, should he feel that the discarding of the embryos carrying the gene against his beliefs then this couple has made no progress and as Kelli says in so may words " they wing it" and hope for the best . Having seen this disease manifested in someone - I find it very irresponsible , but at the same time must respect other's free will to choose what is best for them.
DeleteI agree, the husbands beliefs would need to be clarified. I could not hide from facts like Heather is trying to do. No matter how difficult the information would be to hear, I would want to know.
DeleteTo say Heather's decision to not be tested cannot be determined as a wise choice. It would be completely up to her whether or not having that knowledge is of any importance for her life. If she does not want tested and her husband does not believe in abortion, then I feel like their only decision is to have children with the same chances for passing on a mutant gene, as everyone in history has done in order to reproduce. I do not think the genetic counselor has shed any light, satisfactory to this couple's beliefs, that are beneficial to their situation. Of course, determination of the embryo as a human life would guide the couple's decision to decide whether or not "quietly discarding" the defective embryos could be abortion. If one believes that embryos are equivalent human life, then discarding them would be the same as selective abortion.
ReplyDeleteTo say Heather's decision to not be tested cannot be determined as a wise choice. It would be completely up to her whether or not having that knowledge is of any importance for her life. If she does not want tested and her husband does not believe in abortion, then I feel like their only decision is to have children with the same chances for passing on a mutant gene, as everyone in history has done in order to reproduce. I do not think the genetic counselor has shed any light, satisfactory to this couple's beliefs, that are beneficial to their situation. Of course, determination of the embryo as a human life would guide the couple's decision to decide whether or not "quietly discarding" the defective embryos could be abortion. If one believes that embryos are equivalent human life, then discarding them would be the same as selective abortion.
ReplyDeleteThis is the case that I wrote my paper on. I feel that if Heather does not want testing to find out if she has the Huntington's gene, then I think that is here decision. There is not a cure for this disease and if Heather feels more comfortable not knowing is she will someday suffer from this disease, then that is her choice. As for having a child and using the pre implantation method is what they should do. I also do not think that it is considered abortion to retrieve an egg from Heather and test it to see if it has the hintington's gene and if it does to discard of it. At this point the egg is not an embryo or a fetus and does not have a heartbeat which in my mind does not qualify it to be labeled an abortion. I think that Heather is wanting to be a safest as she can and try not to bring a child into the world that is guaranteed to have a disease. I think if more people knew about this and it wasn't so costly, more people would do this.
ReplyDeleteWhile I agree that preimplantation would be ideal for the couple here , but consideration of the husband's feelings in regards to abortion must be better defined. If he feels that life begins at fertilization, then surely he will see the discarding as morally wrong. In Heather's case I will always believe that a good patient is an informed patient - not to scare people with the " what ifs", but to arm yourself with knowledge so that when and if the disease manifests she knows what her options are.
DeleteI also agree with being informed. Heather needs to find the courage to get tested. Having this knowledge can be enlightening. Wouldn't it be awesome not to have the disease and know that! Then they can discuss the topic of children without fear. And if the news is negative then they can enjoy all the time they have together with more gusto, not worrying about the "what ifs".
DeleteI'm not sure what point Heather is making in not being tested and then choosing to test embryos. Either way, she will find out if she is a carrier. It would be more cost effective to test herself, then if she is not a carrier, she can proceed and have her own children. If she is, then she can seek out professional help and testing.
DeleteI'm not sure what point Heather is making in not being tested and then choosing to test embryos. Either way, she will find out if she is a carrier. It would be more cost effective to test herself, then if she is not a carrier, she can proceed and have her own children. If she is, then she can seek out professional help and testing.
DeleteI think the position I disagree with most here is Heathers' decision not to be tested. I'm not sure if any of you have seen Huntington's Chorea but it is incredibly debilitating before death, and unfortunately doesn't manifest until patients are into their 30's -50's. By then , with no prior knowledge these people have already had children of their own . When I was in my early twenties there was a gentleman in our town who was diagnosed with the disease. When his symptoms progressed, his wife left him , taking their three young children, and as a result of his disease and inability to drive, and work, he was taken in and supported by a local church. He drove around on a lawnmower picking up cans and had the most positive outlook on life. He touched many people and when he passed his service was wall to wall. Before he was unable to do so - he gave testimony in our church - one of the most touching things he stated was that his children were his greatest blessing and his greatest burden. He knew his disease was fatal and would pray every day that his children not have inherited it. The spasms were painful, and he eventually lost his ability to eat, speak , and swallow. I think if Heather is able to be tested prior to conception, then she should take full advantage of it . No mother wants to put their offspring through pain and suffering if she can avoid it , be they 2 or 30 . Part of making an informed decision is knowing the facts , Heather , in my opinion , n burying her head in the sand and hoping for the best .
ReplyDeleteNo one can know the effects of such a horrible disease. I can't imagine what this man went through, but also can't imagine what was going on in his marriage that lead up to his wife leaving him. It is definitely a personal decision to get tested, but as a parent I would not want to pass along such a horrific disease if I knew it was a possibility.
DeleteI think its important to realize what is the main priority for the couple.It was stated in this case that Heather's spouse is against abortion but they both don't want their children to be born with this disease. If they have considered other options such as adoption or fostering children and decided against, I feel that the option from the genetic counselor maybe beneficial to them. According to McMahan, an embryo in the early stages are a process of cell division and the fetal brain is not developed. If the couple believed in McMahan's arguments, preimplantation genetic diagnosis should be considered.
ReplyDeleteThe main priority was to make sure that thier child would be disease free. So having the option of genetic counselor is a good choice for them. Both get their wishes and still can have the family they want.
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ReplyDeleteI can appreciate that Heather does not want to know if she carries the gene for Huntington's disease. I also feel as though she is sort of sticking her head in the sand to ignore that possibility. I feel as though her decision not to be tested is not wise. I have always felt that many times not knowing the answer to a distressing question causes more anxiety than knowing. If she carries the gene, the choices become a little more narrow, she could do the pre-implantation genetic testing. It gives her and her husband more information to have open honest discussions. I do feel as though discarding affected embryos abortion. This too would be something that needs to be out in the open between her and her husband. To me this subject of "what if" is tricky. It sort of forces people to focus on the end, which could be horrible indeed, but there is much living to do before that. Take it back a generation, had her grandparents not had her father where would that leave her? I do not think we (the human race) is meant to be totally free from disease or perfect.
ReplyDeleteWell put Monica! I agree that we are human and therefore imperfect. You have to have the low moments to make the high moments so special. It is all apart of life. I would like to think I would not be the person I am today if I didn't have a rough childhood. It made me convicted in my endeavors, and a stronger person, becoming a Nurse!
DeleteI feel it takes an immense amount of courage to make a decision about obtaining the knowledge that one might have a horrific disease. It was a good thing that her parents and grandparents didn't have that option about knowledge generations ago.
monica i love how you state she is sticking her head in the sand. I feel like if she were to get tested she and her family could be prepared for what was to come.
DeleteI also have to agree that Heather is running away from her problems. I can't imagine the stress and anxiety she and her husband are going through. I think not knowing makes it worse, constantly wondering do I have the gene or don't I??
DeleteSpeaking from experience of being tested for a "disease" I can some how relate to Heather. I still get scanned every 3 months to check for reoccurrence of my lymphoma. I seriously forget all about it up until it's time to be scanned again. I get so much anxiety of thinking about the possibility of it returning. Being pregnant for me, has been a relief because I can't get scanned again until after delivery. My case is different as I would have to go through treatment again and hope for recovery, but in Heather's case she would have to treatment available to try to cure her. If I was in her situation I would not want to tested.
DeleteAccording to McMahan if an embryo were to be discarded this wouldn't be considered abortion because it is just in the process of cell division ., I tend to agree with him. So I think that the decision of preimplantation and discarding would not be considered abortion since they are using embryo's. I do not think that heather is making a wise decision about not being tested for huntington's. I feel like she is ignoring an opportunity that is being given to her by not getting tested. But this is her decision to make. I feel like the genetic counselor has given them another resource to use besides adoption and prenatal dx and abortion. Again as long as they are given all the information and given the opportunity to ask questions and get second opinions the decision is their's to make.
ReplyDeleteI agree with you it is not considered abortion. By doing this helps Heather and her husband to have the family they want without the fear of thier child having the defective gene.
DeleteI agree that testing herself is her decision to make. In the end it is their decision and will have to live with the consequences.
DeleteI agree if all the information was given the opportunity to ask questions the decision is their's to make because the ultimate end would be similar. Decide not to test have a child with the disease, have to make end of life decisions or decide to test and prevent before life on earth. Hard call!
ReplyDeleteHeather D. choice not to get tested is her personal decision. Even if she did get tested and it was found that she does carry the defective gene what would she do with the information? This would change her life at a younger age knowing there is nothing she could do about at this point. Now speaking of having children by testing the embryos and only using the ones that are free of the defective gene I feel is a great choice. Way not use all the science technology we have today to make a better life for ourselves and children. Depositing of the embryos that carry the defective gene I feel is not selective abortion.
ReplyDeleteI agree with you Shirley! We have so much scientific research and technology if they are willing to do it and can afford it they should. There are so many awful diseases out there, if you can prevent pain and suffering why wouldn't you?
DeleteShirley, I completely agree with you. Through science it would be possible to cut down on the occurrence of some diseases. I would find it whether upsetting to find out at a young age that I was going to develop such a debilitating disease and there was nothing I could do about it. I would end up depressed and probably not accomplishing much.
DeleteThe topic that I'm going to argue, which I totally disagree with is the idea of adoption for Heather and her husband. This is the solution that solves all the problems. Heather doesn't want to know if she has Huntington's disease, with adoption she doesn't have to be checked for any purpose. Heather's husband doesn't believe in abortion so discarding embryos or elective abortion for a fetus with Huntington's disease is not an issue. Both Heather and her husband have concerns about their children having the disease. Adoption eliminates that issue too. There are so many children in the world that need parents. They would be saving these children from a terrible life of hardship, possibly even death, and giving them all the love they could take in. This would be an ideal opportunity for Heather and her husband to create their perfect family. They could even choose the age and sex of their children if they wanted to. Thinking from a Utilitarian point of view, adoption would maximize the overall level of happiness and minimize pain and suffering promoting the greatest good for the greatest number of people. The adopted children would be happy knowing life will be better. Heather would be happy knowing she doesn't have to be tested and her children won't have Huntington's disease. Heather's husband would be happy knowing he wasn't placed in a morally compromising situation having to choose the life for his embryos. Using Benthem's version of cost analysis there would still be a monetary gain with adoption. Adoption is expensive, on this we can agree. The cost of IVF and genetic preimplantation (a couple times) with diagnosis is just as expensive if not more. What price can you put on a child and family who doesn't have to deal with Huntington's disease vs. one who does? Happiness and love are priceless. Kant would agree, it's the right thing to do for all the right reasons!
ReplyDeleteI love your response, great job using all our ethics! My critique would be (one I don't agree with) that they are adopting a child with potential unknown health history that could have a hidden genetic propensity for diseases as well. They are still taking a risk, adopting a child that still may have Huntington's. If they choose adoption over trying for a child themselves, they may as well have a baby and not get tested at all. It would be for all the wrong reasons anyway!
DeleteI hope this isn't to far in left field!
ReplyDeleteI dont' think you are in left field at all. The cost for genetic preimplantation would be very costly to the family. And what if they did have a child and heather ended up with hunington's? That cost along with the cost for the baby could bankrupt the couple. Adaption can be costly, but it is a very good option for someone that is unable to have or doesn't want to have a child of their own.
ReplyDeleteHuntington's Disease is such a horrible and life altering disease for the patient and their families. I think its Heather's choice to make in regards to be tested for the gene. Although I think NOT getting tested is not in her best interest if she wants to have a family. Personally I would think pre implantation /in vitro would be much more expensive than Heather getting tested herself. And if her husband is against abortion where do they draw the line discarding embryo's? They also have to consider the fact that if they have children regardless of how (adoption or IVF)and if Heather is positive for the gene and inherits the disease, her husband will have to raise a family and care for a sick wife.
ReplyDeleteI agree and those points are well taken. I feel she is behaving irresponsibly and should do more research before trying for a baby. She is in a state of denial
DeleteI don't have any problem with Heather's decision to decide on not being for Huntington's. Clearly she knows the possibility of a positive diagnosis and she and her husband still would like to start a family. When you have a child you only want to the best for them so I can understand why they would choice to be selective of embryos. I think it's their best option for a biological child. My only question is what they consider to be "abortion". I would not consider it to be abortion to dispose of an embryo before life starts with working organs. It may be a possibility that her eggs could be tested before fertilization ever even takes place.
ReplyDeleteI do not think Heather should be tested for the Huntington's gene, from a consequentialist standpoint of ethical egoism, she should not find out if she is a carrier. It will interfere with her future happiness and pleasure. She would always be anxious and wondering when and if the disease might occur. I do not agree with the genetic counselor's suggestion either for the same reason. If some embryos were carriers of the gene, she would know that it came from her as well. Then she would be fearful of dying early and leaving her child and husband. I do not believe that pre implantation genetic diagnosis and the discarding of embryos
ReplyDeleteis morally equivalent to prenatal diagnosis and selective abortion. A true abortion is a result of a mother carrying a fetus and then opting to abort. I do not consider manufactured embryos vital, they cannot grow for long outside the womb and must be implanted to develop. I think it is telling that in the case study they mention that the embryos will be "quietly" discarded if they are carriers of the Huntington gene. If there is nothing morally wrong with discarding these embryos why do they have to be discreetly discarded?
I agree the quietly comment really stung after I read it. Nothing is done quietly if there is not a moral issue involved.
DeleteHeather D personally benefits from her decision not to know if she is a carrier because it obviously distresses her to conceive the possibilities. There is a burden in knowing.
ReplyDeleteI disagree with Heather's decision. She is risking the possibility of her future child living without a mother, or inheriting the gene. I feel this is irresponsible. Technology may fail us sometimes, but it is also an invaluable tool. She owes it to herself and her future child to know all of the facts, no matter how difficult they are to face, then an informed decision can be made. This is really no diffierent than being educated and informed on the effects that drugs, alcohol, tobacco or poor prenatal care have on a fetus.
It is very exciting what we can learn from genetic coding technology, and we should use it responsibly and ethically.
I may not agree with Heather's decision, but I defend her right to it.
I believe that Heather is making the right choice in not being tested for the Huntington gene. It could cause some problems for Heather if the test is positive. An insurance company may try to deny her coverage due to her preexisting condition. She may also not be considered for advancement in her career if found to be positive for Huntington’s disease. It could also cause her to worry about each and every twinge that she has fearing it is the disease development. I believe that preimplantation genetic diagnosis with discarding of the affected embryos is morally equivalent to prenatal diagnosis and selective abortion. There is a difference between the two though. Any embryo will not survive unless kept in certain conditions (implanted in a uterus or preserved and frozen) while the abortion for a positive genetic diagnosis is ending what I consider a human life.
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ReplyDeleteI can see Heather's perspective somewhat. She is unwilling to see if she has the inherited gene. She and her husband would also like to have a child that would not suffer the same fate as her father. The genetic counselors idea is a practical one considering the parameters the couple has placed on her. If things are looked at from an unemotional practical perspective then the used embryos will be discarded and the ones considered untainted will be used. My further thoughts are these embryos are not truly untainted. They will be free from Huntington's, which is a terrible disease, but could easily have other genetic defects. How will the couple deal with the possible birth of a down syndrome child or autistic infant?
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