Blog #2 due on Friday Oct 24 at 5pm (EST)
Read or listen to the article from NPR:
Brianne and Matthew Wojtesta's neurologist explained she has had times in the past that she's had to explain to a parent that their child may develop some form of this disease at some point. She states "I can't
tell you when, I can't tell you what it's going to look like. I can't
tell you if there's any way to prevent it. And I can't tell you that we
will be able to treat it if it develops." You can imagine how difficult
that may be for a family to hear.
Consider the perspective of both the research community and a newborns family regarding this test. Who are the stakeholders and what are the ethical implications present here? What are
some important things to take into account when deciding if this should
be a screening test mandated to all newborns? Remember, getting this test early enough may help alleviate symptoms and has been proven to save a child's life.
After reading the article, are you in support of Krabbe screening? Explain why or why not.
Deciding whether to screen for Krabbe really is an enormous dilemma and both options have genuine disadvantages. Hearing the personal story of a family who could have benefited from their daughter being screened is really heart wrenching, but we also have to keep in mind that even if she did screen positive early on, there is a chance she would have died from complications in treatment as well, just like those other cases mentioned in the article did. Krabbe is a disease with a very sad ending, but I think that I have to argue that screening for it is not reasonable at this time. It is such a rare disease and being screened positively for a genetic indicator often leaves families with vague results that can haunt them for the entire childhood of their baby. The anxiety and panic that this looming possibility causes in families that screen positive is a huge difficulty, and even those that test absolutely positive only have treatment options that are risky and questionable. I don’t think that the benefits of early detection are great enough to make the screening worthwhile. Ethically I don’t think that absence of screening would pose a problem until it is proven that screening really does have great possibilities for prevention without all the large risks present now, especially because the disease is such a rare one. Hopefully more research on the topic will lead to developments of better and safer treatments that will pose a better chance of saving children who do have Krabbe, and at that point a screening test would be much more useful and valuable.
ReplyDeleteIt is a tough decision, but I would have to say that Krabbe screening should not be mandated.
ReplyDeleteThe treatment is risky but some may say that the risk is worth it when the alternative is death anyways. Some may feel that they have nothing left to lose so they would undergo the risky treatment. However, since diagnosing Krabbe is difficult and often ambiguous a person cannot be convinced that the alternative to treatment would be much worse than the risk. If a person knows that there is a slight chance that their child will develop Krabbe, opting for treatment could put a perfectly healthy child at tremendous risk. In New York, they only provided treatment for those with definite signs of Krabbe but even then - having a child die from an option that you as a parent chose must be a lot harder for parents to handle than having the child die naturally from an uncontrollable disease. If there is not an effective treatment, then it is unfair to make the parents constantly worry about the health of their child rather than enjoying the time they have with their kids -- especially since the disease is rare and a nonspecific screening would mean that a lot more people than necessary are suffering from this anxiety.
Grantham says "Children are not being screened for Krabbe at birth and dying because of it." However, even when they are being screened and treated they are still dying. All that the screening is doing is causing unnecessary worry to parents and at best preparing them for the worst. However, a parent probably does worry about the worst potential outcome a lot of the times without the screening. Parents worry about disease, kidnapping and probably do consider what would happen in the worst case scenario. Screening test results would only worsen this worry since it adds a level of authority and pseudo-validity. Also, considering that the disease is rare and the test nonspecific, it would waste a lot of resources running diagnostic tests on perfectly healthy infants.
The test should not be mandatory but researchers should ask parents if they would like to have their child screened as a part of research so that the screening test and treatment can be further developed and improved.
I believe that Veronica raises a very valid point in her response, "the test should not be mandatory but researchers should ask parents if they would like to have their child screened as a part of research so that the screening test and treatment can be further developed and improved." Conversely, I believe that it should be mandated because by getting a positive screening parents and physicians can work together in making a treatment plan for when the child does become sick. In this article parents who lost their child to Krabbe wished there was mandated screening, because it is a rare disease that many physicians are not knowledgable about. By not having mandated treatment, when a child does become sick it may become a guessing game for the physician to determine the cause is Krabbe disease. Therefore, I believe that mandated screening would be a proactive take on this disease. I do realize that the treatment available is not ideal. Therefore, even though i believe that it should be mandated, i think Veronica's point of asking parents at birth would be a great compromise.
DeleteThe stakeholders are the families who have these babies that are diagnosed with diseases and cannot do anything due to the timing of the results. The ethical implications are that we are withholding information from parents when we could be helping their children by helping them by early intervention with early knowledge from the tests. I believe that there would be no harm in having these screening tests. Some important things to take into consideration are that is the test invasive or hurt the baby when the test takes place. Is there a cure for the disease? Is there a reason/benefit/advantage for the prescreening? If the screening is beneficial to the children then it should.
ReplyDeleteI generally would not support Krabbe testing in infants because it seems that the cons heavily outweigh the pros. Reading this article, the numerous cons really stick to me and the few pros that there are don’t seem enough to gain my support. The main reason to have this type of test is to catch the disease before it becomes symptomatic and to apply treatment as soon as possible, but the article states that many test results are unclear and ambiguous, and it is hard for doctors to act based on such unclear information. I think these ambiguous test results would make parents very anxious, because the only information they know is that their child has some form of Krabbes, and their doctors do not even know how it will play out, and doctors cannot even apply treatment. It seems like this anxiety would be unnecessary for something that cannot be treated even if parents knew before symptoms started. In my opinion, I think a lot of screening tests are to give people peace of mind, but something as complicated and uncertain as Krabbe test results cannot really provide that. Even if the doctors were to receive a very clear and informative test result for the presence of Krabbes, the treatments is risky, irreversible, and has caused complications and deaths in the past. In general, I do not believe just because a treatment is risky and life-threatening that one shouldn’t do it, but from the article, I have the impression that the Krabbes treatment is in its very early stages, which is why I listed this risky treatments as a reason to oppose Krabbes screening.
ReplyDeleteThe only reason why I would support this screening is to implement more research into it. I think one of the only ways to know more about this screening is to continue to build up on it. If more research is done, more successful treatments can also be developed and, and the whole process of detecting and treating Krabbes would get a lot better.
I feel very conflicted over the issue of screening for Krabbe in newborns. However, like Danny, I feel that there are not enough benefits of the screening to outweigh the negative aspects. The biggest problem I have with screening for Krabbe is that the treatment is still experimental, and even if the disease is detected early enough for treatment, the outcomes of the treatment are not very high. One of Wilson and Junger's criteria for screening tests is that there should be an acceptable treatment for the disease, and I do not think the treatment for Krabbe is sufficient to justify this. Additionally, the fact that results can come back ambiguous adds unnecessary stress and anxiety to the families of children who test in to that category for no reason.
ReplyDeleteYet, Christina Levasheff, who lost her son to Crabbe, said in the NPR article that parents of children with a terminal illness should have "knowledge and options and a choice." While I typically agree with that sentiment, I feel that the situation is different with Krabbe because treatment is not always feasible or effective.
I think the best approach would be to offer screening for Krabbe if parents desire, but not require it, as suggested by Dr. Ross. Given the unsure nature of the disease and treatment even with a positive diagnosis, I think until a more consistent treatment is developed it is best to leave the choice up to parents.
I agree with Rachel that until a better treatment is developed it is best not to mandate screening. Currently, Krabbe disease has an uncertain diagnosis and the New York data from those who sought early treatment is not good. Of the 4 children who got treatment 2 died. Retrospectively though, parents whose kids develop Krabbe may wish they had known earlier and parents whose kids had flagged for Krabbe but did not develop the disease will wish they did not have to live though the fear.
DeleteThis article brings up a controversial issue about Krabbe screening. But based on the information that is given, I don’t believe I would support Krabbe testing in newborns because the benefits from screening do not seem to outweigh the negative aspects from the screening. This screening does not meet all the requirements for the Wilson and Junger’s criteria which is why I am mainly against the Krabbe screening. One of the criteria is if treatment is available, however the treatment that is available at this time does not guarantee that the newborn will become free of the disease because a lot of complications seem to come from this treatment. Also, it does not seem to be cost-effective because the treatment itself seems as if it is expensive. Yes, the disease is serious but even the early diagnosis can give ambiguous results and that leaves parents anxious and stressed. I can’t imagine being a doctor telling them that I cant tell you when, what its going to look like, if we can prevent it or if we will be able to treat this disease because that is unfair to the family and leaves them in a situation that no one wants to be in.
ReplyDeleteAt this time I don’t believe that it should be mandatory for all states to screen for Krabbe until there is a treatment that is developed that is 100% effective. If a parent wants to screen for Krabbe then it is their decision but I do not think it is something that needs to be mandated in every state at this time. If a family has a genetic history of having Krabbe then yes it should be screened for that certain family. This is a difficult situation because Krabbe is a serious and fatal disease, however until we have an effective treatment and treatment centers available it should not be mandatory for every state.
Whenever something is mandated, the public needs to be convinced that is is absolutely necessary or else they may feel like the state or government is taking away their rights to make a decision for themselves- with no good reason. This remains true when it comes to mandated newborn screening. Newborn screening is a very controversial issue and it is necessary that the pros of screening outweigh the cons in order to make it mandatory.
ReplyDeleteIn this article different people had varying opinions regarding if newborn screening for Krabbe should be mandatory or not. Some people believed the cons and risks outweighed the pros. When parents get a positive result for Krabbe their baby may be asymptomatic and then they must play a painful and haunting waiting game. When they get the positive result it is unknown when their child will get sick. And the current treatment is not as beneficial as people would hope. When the doctor performed 4 umbilical cord blood transplant 2 out of the four babies died from complications. This doesn't seem worth going through the treatment available. On the other hand, by mandating screening if a child does get a positive result, when children get sick they can be treated with proper drugs to remain comfortable and have a better quality of life, because if they did not have screening a doctor may not know what is wrong with them because Krabbe is such a rare disease.
From this article, it appears that parents who have a child with Krabbe (or even just get a positive preliminary screening result) would prefer for this screening to be mandated, therefore when a child does become sick determining their illness does not become a guessing game.
Overall, even though the current treatment available is not ideal, I believe that it is always beneficial to do screening in order to get whatever preventative care is available- even if the child is asymptomatic at the time of screening. Like care for any illness, technology is always evolving, even if it is not ideal currently it will hopefully continue to advance.
This article poses just one of many medical ethics issues that face us today. In this day and age, there is so much medical technology available to us, and new methodologies are being discovered all the time. This article, however, brings up the issue of whether of not screening for Krabbe. To me, this is a very difficult issue to form an opinion on, and I can definitely see positives and negatives with either side of the arguments. If I were forced to choose, however, I would decide that screening for Krabbe should not be mandated. Obviously, there are a few stakeholders involved in this issue. You have parents, who will obviously be devastated and mostly helpless if their child is diagnosed with Krabbe. You have the child themselves, whose quality of life will deteriorate suddenly and quickly. And then you have the doctors who are searching for a way of preventing the onset of this disease. However, my opinion stems from the fact that screening for Krabbe and catching it before symptoms onset is not even close to a guarantee that the child will have a better outcome or even survive. The article discusses that the current treatment is risky, and in a group of 4 children, 2 died and 1 was left with severe neurological damage. I think that in this case, the treatment available is not a viable option just yet, or even a very good one. While the children would obviously die without the treatment, the benefits of early screening and diagnosis are still do not offer that much more of a chance. It is a slim margin that the treatment will be effective. Furthermore, screening does not guarantee a definitive answer one way or another. For those parents whose children are screened and whose results cannot be explained, they live a nightmare watching their kids every day in fear of them suddenly growing very ill.
ReplyDeleteOverall, my opinion is that the screening should not be mandated for the reasons I discussed. I do, however, think there should still be the option. Parents should be presented with an unbiased account of what Krabbe is, what screening may or may not be able to tell them, and then the treatment and its risks. With the full informed consent of both parents, I believe they have the right to seek screening and treatment for their child. With the situation of Krabbe, where so much is uncertain, a parent should not be forced one way or another to have screening done when it may not end up helping. However, this is still an incredibly complicated issue. I could not imagine having to make this decision if I was faced with making about my own child in the future.
I will always support newborn screening for any kind of disease. It is better to be safe than sorry. I would rather anxiously wait for test results for a week than be blind sighted by a rare condition in a previously healthy child. The emotional turmoil of waiting for results or receiving a false positive are worth the pay off. However, I acknowledge that not all parents may share this sentiment. Therefore, newborn screenings for such rare diseases should be recommended but not mandatory. Doctors should provide parents with all the information of the positives and negatives of opting for Krabbe disease screening and allow parents to made this choice. Personally, I support newborn screening for all diseases.
ReplyDeleteBy the time a doctor diagnosed Jaylah with Krabbe disease, it was too late for any treatment. If she had been tested, her quality of life could have been better and her life prolonged. It is better to know and have choices rather than finding out after it is too late. Treatments are most effective while the child is asymptomatic.
Of the four babies who underwent the surgery of using umbilical cord blood transplants to treat newborns with Krabbe, two of them died of complications, one child is severely neurologically impaired, and one child has had problems but has been able to start kindergarten. Babies who survived this risky treatment did much better than babies who got no treatment. But the transplant had to be done before symptoms appeared. These odds, although not very positive, are better than the alternative of no treatment. One child was even able to start kindergarten! A child without treatment can not dream of such an accomplishment.
Without screening, families become desperate as they struggle to figure out what's wrong. Since Krabbe disease is rare, some doctors may not even be able to identify it. It is painful for a parent to see their child suffering and not knowing what to do about it. I am sure this takes a greater toll on a parent than receiving a false positive. Knowing that your child has Krabbe disease and you could have identified it with a simple screening must be horrible.
Like Levasheff states, "When you have a child that's going to face a terminal disease, do you want knowledge and options and choice, or do you want it to just happen to you?" Personally, I prefer knowledge and options and choices, but I respect that others may not feel the same. Newborn screening for Krabbes disease should be recommended, but not mandatory.
Initially, my stance on this issue was that screening should not be mandated, but rather, more efforts should be focused on research. I can see how my perspective is a bit contradictory – how can researchers conduct more studies and provide more evidence without more screening and testing? Therefore, I think that Filiz makes a very good point, saying that newborn screening for Krabbe disease should be recommended, but not mandatory. I’m not sure I agree with the recommendation, but I definitely think that if parents are at least informed, aware, and provided with information regarding the disease, including the risks and benefits, I think that this could be more reasonable for the time being until we know more.
DeleteGenetic testing will always be a controversial topic. There are some that will say that parents have the right to know what will befall their child in life, while others say that if there is no treatment and no way to stop the disease from occurring then it should not be tested for. I am also of a split mind on this, especially when it comes to testing for diseases such as Krabbes. If there was a definitive test for all levels of the disease, as well as ways to treat and/or manage the disease at multiple levels and not just in newborns, then I would be for the mandatory screening of infants because if parents get the horrible news then they have ways of managing the disease. On the other hand, if parents get an imprecise or ambiguous results from these screens and are saddled with years and years of waiting to see if the child develops the disease, always worried that the slightest thing could indicate the onset of the disease, it cultivates a fear in the parents that destroys the time they have with their children while they are not exhibiting symptoms. For this reason, I believe that any disease that does not have a known treatment and known benefits of treating a child as early in life as possible should not be mandatory, but rather optional. Some parents may want to know exactly what will befall their children, whereas some parents may want to live in ignorance if there is nothing that they can do about the eventual disease that may befall their child. This is a personal choice that the parents should discuss among themselves and their doctors shortly after childbirth, and should not be mandated by the state.
ReplyDeleteAs a public health professional newborn screening for as many diseases as possible is very important because it can save many lives, and can reduce costly treatments down the line f the condition is known and treated right away. I agree with the general premise of newborn screening and know the benefits of such a mandatory program. I am not arguing that we should get rid of all newborn screening, but I think that it is important to think about the implications of such screening for diseases such as Krabbe Disease. I think in diseases such as that it should be the parent’s decision. Because the results can be ambiguous, and it could leave the parents with a lifetime of worrying about their children, parents should be able to choose whether they want to know this information. This is only the case when the results are ambiguous and there is no set treatment plan, such is the case with Krabbe’s Disease.
When dealing with children versus adults, the ethics of medicine seem to shift. Most people would do absolutely anything to save the life of a child and to make their life more happy, comfortable, and happy. This is the ultimate goal of newborn screening; diseases that can be caught early and subsequently treated. However, with conditions such as Krabbe’s disease, this isn’t often the outcome. The screening test for Krabbe’s does not give a definitive prognosis, and neither does the diagnostic test. Because of this uncertainty, families whose babies are screened positive are often left completely in the dark as to the fate of their child. Though early treatment has been shown to be effective, in many of the cases the child still ended up dying.
ReplyDeleteThough researchers may want mandatory screening in order to learn more information about this low-incidence disease. Families, on the other hand, should be involved in this process. Parents of newborns should be given information as to the nature of the disease and screening test and then allowed to choose whether or not they want their child screened for Krabbe’s disease.
In order for a screening test to be implemented, the disease should be serious enough to warrant testing but also have an effective treatment. The screening test should also be reliable and be able to accurately predict prognosis. In the case of Krabbe’s disease, because the disease course is so unpredictable, ignorance truly is bliss.
After reading this article I considered the research perspective of Krabbe disease. There is a possibility the child will eventually have this disease, but no one will ever know when the time will come. Why should parents wait for something negative to happen to their child? But then I thought that screening for Krabbe disease can save a child or hundreds of children. Although this disease is very rare and the onset is unexpected, I think there should be newborn screening in all states for this disease.
ReplyDeleteThe article comments on the distress and fear of parents by stating, “But then everything starts to change – and without screening, families become desperate as they struggle to figure out what’s wrong.” Some parents have already experienced this distress of not knowing what is happening with their child. Since this disease is so rare, I don’t think many parents are aware of the cause and symptoms of Krabbe disease. It is difficult to catch. Although there is not a perfect cure for this enzyme deficiency, it should be mandatory of all states to perform the newborn screening. Parents who find out that their child is diagnosed with Krabbe disease can physically and emotionally prepare to enjoy every day with their child. Since parents and physicians don’t exactly know when the child will begin to show symptoms of the disease, it is important to both enjoy their child’s life as well as prepare to modify life to the needs of their child. I would argue against neurologist Kwon’s claim that “no one should be screening for disorders that are this difficult.” Families should be able to access medical information and testing to anything that can be problematic to their child’s life. It is better to know and hope that treatment of symptoms increases quality of life for the child than to regret not testing a child early on.
Screening tests, such as in this example of the newborn screening test for Krabbe's disease may be considered ethical or unethical depending on one's professional training, religious views or personal opinion. For healthcare professionals, it is viewed through a strictly scientific lens as a primary prevention tool to catch disease early and therefore prevent its development. By doing so, health professionals are successfully (and ethically) fulfilling their roles as soldiers in the eternal war against "disease," an unnatural and uncommon condition or observed phenomenon. Newborn screening is a tool in their arsenal to fight the battle. But who decides what is unnatural or natural, and therefore gets the "disease" label? Physicians who treat patients for medicalized diseases. New parents may consider newborn screenings tests as ethical or not, but will likely consider it as an undoubtedly useful tool because it gives them options to fight an infant disease, such as Krabb’s disease, as they define it. Parents may not want to accept the “diseased” label of their new son or daughter, and choose not to move forward with treatment, or they may choose to go ahead with treatment. Either way, it is better to look at treatment as an option determined from widespread newborn screenings based on the decision of the infant’s family.
ReplyDeleteScreen, baby, screen. I think that the benefits of screening definitely out way the risks of screening as long as screening test passes the Wilson and Junger Criteria. Information is power and with that information people can make choices that are best suited to respond to dealing with a difficult life decision. It might be in the interest of the child involved to pursue a different life course or alter their behavior to minimize the risk of getting the disease if it is possible. There may always be questioning in the parents minds if their child did later develop that disease about what they could have done differently if they had known about the disease. There is a lot of stress that would be placed on parents at that point that might be similar or likely even greater than the stress of having a false positive or knowing that their child could always possibly develop that disease. Also, even if the parents and child do have a hard time coping with the thought of possibly having to treat a disease later on, there are a variety of counseling options and other outlets that the person can pursue that are helpful to them. I think that the benefits of screening far outweigh the costs if the Junger Wilson requirements are met.
ReplyDeleteI think this is a hard dilemma that will never result in an easy answer. On one hand, there are the few families who experience the preventable tragic death of their newborn due to this rare disease that lobby for screening and awareness. On the other hand, as a result of increased screening, are more families who undergo significant stress and uncertainty for arguably no reason at all. This was the case with the Wojtesta family and will be for many others.
ReplyDeleteSince the families of the affected newborns are so traumatized by their children’s early deaths, they are adding a disproportionate (though understandable) amount of activism to this conversation. In other words, Krabbe screening is not really making a significant difference, but it’s hard to tell that to a group of grieving parents who want to spare others from the same plight. The fundamental problem here is that the grieving parents are either misinformed, or blinded by trauma to the fact that screening would not necessarily have helped their child live, nor will it definitely help others survive.
When considering the implementation of a mandatory screening test, it is first necessary to establish that the screened disease has a considerable prevalence and designated treatment available. The screening for Krabbe does not meet either of those criteria. In addition, it places significant stress on parents of newborns who screen positively, whether or not they actually become diagnosed. As hard as it is to remove emotion from this debate, I think it’s necessary in order to make a logical decision. While parents of affected newborns definitely deserve our sympathy and support, their reasoning is not sound when it comes to the cost-benefit analysis of this screening test. There is too large a gap in knowledge and treatment for this screening test to be worthwhile. For these reasons, I do not support Krabbe screening for newborns.
It seems to me like that most of those against newborn screening for Krabbe disease argue that the risks outweigh the benefits and that the treatment is dangerous and not effective enough. Some parents, like Brianne Wojtesta, might say that even the emotional trauma of a false positive is something they will never forget and that the fear will never disappear. However, although parents may be traumatized emotionally, if screening is not mandated, newborns with Krabbe disease could go undiagnosed and they will be the ones who will be traumatized physically. Not only is Krabbe disease asymptomatic, but it is also rare.
ReplyDeleteIn my own personal opinion, this disease is so rare and fatal, that I think the false positives are the better of worse options. It is better to get a couple of false positives and run additional tests to be sure than to get false negatives and newborns go undiagnosed. I understand why many would argue that screening creates more harm than good, but I still believe that if there is something to worry about, parents should know about it and be able to make a choice, no matter how difficult. I still think that ultimately if there is a chance of early detection of a disease, even if treatment is risky and has a low chance of success, it’s still a treatment, and parents should be able to know about it and know that whatever choice they make, they made it only after weighing every possible option.
Personally I am in full support of screening for any and all diseases, even ones like Krebbe. I understand that when a disease is vague and generally untreatable, like Krebbe that it’s just better not to know if the possibility is there. I can’t imagine how unbelievably hard it must be for a parent to watch their kid grow up and always be wondering if their child is going to suddenly develop symptoms of a deadly neurological disease. But for me, the alternative is worse. The alternative would be to have my child suddenly start acting differently and then not know what was going on for several months, only to find out that it is too late to treat them, that if I had known about it earlier I could have done something to save my child.
ReplyDeleteThe issue with the whole debate is that despite how I may feel, there are many parents who do not want to know the results. If a newborn screening for Krebbe were implemented, then the state would essentially be forcing parents into listening to something that they have every right to choose not to hear. At the same time, if screening is not enforced by the state, then the parents who do want to have their child screened will either not get the information they want or will have to pay a great cost out of their pocket. This puts the state between a rock and a hard place. Again, my personal opinion would be to go ahead and screen for the disease but give parents the option of knowing the results or not. This way everyone retains their autonomy and in case a family did want to hear the results and the child does develop a disease like Krebbe, the doctors can use the result from that screening to diagnose the patient earlier and give more of a chance of treating them.
I think I tend to lean toward the general opinion of the medical community that screening is an important step towards a healthier general population and a greater body of knowledge. Even though some may argue that it is wasteful or useless to screen for such a rare disease with such risky and controversial treatments, all knowledge is useful and leads to better treatment in the future. Screening allows scientists and doctors to monitor incidence and prevalence rates more accurately, to follow the course of the disease, and to gain more information on effective management and treatment of the disease. Even though some parents may argue that they would rather not know or that the pain of knowledge limbo is unbearable, I think it is important to think of the pain of the regret one would feel if they hadn't pursued a treatment that would lead to a better health outcome for his/her child. It is absurd to think that someone would rather watch their baby suffer out of ignorance than be able to make informed decisions about the welfare of an infant. Even if the only treatment is pain management, that is still better than nothing and I'm sure many families would find solace in knowing they did everything they could for their child even if the outcome is not a successful one. I think cost effectiveness is the most valid argument against newborn screening for diseases like Krabbe, but I think the knowledge gained and the suffering prevented on the part of the child far outweigh the monetary or emotional costs to the family.
ReplyDeleteMedical innovations and technology seem to advance every day, potentially providing hope for suffering people. However, it is important to keep in mind that this is not necessarily always the case. The NPR article reflects how newborn testing for Krabbe disease can create fear, anxiety, and distress for babies and their families. Unfortunately, these negative effects don’t only come with the diagnosis of the disease, but actually with just the mere idea of testing for its presence. The decision to test is clouded with uncertainty – there is simply not enough research and information on this condition, and the most frustrating part for physicians and parents is that the outcomes are out of their control. All they want is answers to their questions.
ReplyDeleteThe stakeholders are obviously the baby, whose life would be primarily affected. If they test positive, then they would either be fortunate enough to receive early intervention to prevent the negative impact of the disease, or they would suffer from treatment, as noted in the article. The baby’s parents also play a crucial role, as they are the ones deciding on their child’s quality of life. Physicians are also important stakeholders, as they usually the voice of reason who parents turn to for guidance on such difficult decisions. However, they themselves could also be just as conflicted, due to the lack of sufficient information regarding Krabbe disease. I think the most crucial stakeholders are researchers – we are depending on them to investigate and provide more evidence. This torch would then be passed on to policymakers, who can decide whether the screening should be mandated or not.
The ethical implications mainly involve the patient, the baby. How can their parents decide on the fate of their child? Knowledge is power, but do parents really want to know everything, including potential harm? Would this cause unnecessary stress and worrying? Do they just let life take its course and wait for fate to decide? If their child tests positive for Krabbe disease, do they pursue treatment to potentially prevent negative effects – despite that this might even cause more harm or even kill their child? Or do they forgo treatment? Do they let their child suffer so they can be with them while they live? Evidently, there are so many ethical questions and so many risks surrounding this issue. More ethical implications arise regarding the lack of research – do states need to mandate testing in order to provide studies with more information? Is this fair to society since it would be morally right and justified to provide for the greater good and future generations?
When deciding if there should be a screening test mandated for all newborns, it is important to take into account the disease prevalence, if the disease is common, and if it is contagious. It is also important to consider the treatment for the disease – is it effective? The NPR article states, “Five infants in New York have been candidates for cord blood transplants. One family refused. Four babies got treatment. Two of them died of complications. One child is severely neurologically impaired. And one child has had problems but has been able to start kindergarten.” I think that parents are more likely to pursue treatment, regardless of its potential effects. Personally, I think that they would rather do this then having the end of their child’s life in their hands. Clearly, a decision like this is an extremely difficult one that takes a great toll on physical and emotional health of the baby and their family. After reading the article, I am not in support of Krabbe screening due to the lack of research and information on the disease. I think that more statistics are needed – decisions like these must be made with more of a sense of assurance rather than uncertainty. The fact that New York has been the only state to screen for Krabbe disease reflects how the disease is not very common – as we do not hear about many babies from most states that do not screen for the disease being affected by it.
I believe that the Krabbe screening is a good idea in theory, but the application is not yet perfected. While it is important to screen and catch this uncommon, life-threatening disease, there isn’t enough information on the disease and the treatment options are lacking. Based on the Wilson and Jungner criteria, I do not think that it meets the proper criteria. Yes, Krabbe is asymptomatic, and it is serious disease. On the other hand, I don’t think that the proper and effective treatment is available, and diagnosing the disease is not anywhere near perfect, and is actually not very accurate. I believe that the screening process puts an unfair burden of parents. There are far too many false positives, and this disease is very serious, so parents ho get a positive screening result are put through the ringer. Furthermore, even if the follow up comes back positive, the treatment is still experimental and the results are not necessarily better. From what I read in the article, there are a great deal of complications, and many of the children that undergo the transfusion die, or still have complications following the treatment.
ReplyDeleteOverall, I think that the screening is a good idea, but I don’t support the mandatory screening because the benefits do not outweigh the negative repercussions. I agree with Ross in that it is basically an experiment, and consent should be given before screened. There are simply too many unknowns, and not enough benefits. Even coming from a parental point of view I don’t think that my view woud change.
II agree with Ramsey. In bringing up the Wilson and Jungner Criteria, she gives hard evidence as to why this screening is not quite ready to be use in practice. The only instance I can imagine in which it would be beneficial to screen for Krabbe disease is if there is a known or suspected family history of the disease. Therefore, even though there is still a risk that the screening and examination of DNA would lead to uncertain results, the parents are aware of possible treatment plans. Even if this devastating disease is present, the family can at least keep the child comfortable with proper pain medication as soon as possible if they are aware of the disease. I feel that genetic screening for the entire population would be too risky though, both in terms of ambiguous test results as well as poor and dangerous treatment options.
DeleteI can’t imagine how unbelievably hard it must be for a parent to watch their kid grow up and always be wondering if their child is going to suddenly develop symptoms of a deadly neurological disease. I also cannot imagine the alternative. The alternative would be to have my child suddenly start loosing behaviors, stop developing typically, and then not know what was going on for several months. The desperation would be unbearable, especially with Krabbe disease where after the child develops neurological symptoms it is too late to treat them. To live knowing that I could have done something to prevent this from happening to my child would be devastating.
ReplyDeleteThe major dilemma with Krabbe is that the early treatment is the only treatment but is potentially dangerous and the diagnosis based on screening results is not clear. Doctors making the diagnosis may be unsure what to do with the information of high risk or low risk when faced with the responsibility of suggesting treatment if that treatment may lead to death or further injury as it has in New York. Undoubtedly, there will be parents not want to know the results and those that do, even if the extreme consequence of that decision is hard to comprehend.
If a newborn screening for Krebbe were implemented, then the state would essentially be forcing parents into listening to something that they may not want to hear. The question in this situation is whether the parent has the right to choose not to test. This may result in many undiagnosed cases where the disease could have been prevented. Is it the parents’ decision to test or is the state obligated to test all children?
Most of those in opposition to newborn screening for Krabbe disease argue that the risks outweigh the benefits and that the treatment is dangerous and not effective enough. Some parents, like Brianne Wojtesta, might say that even the emotional trauma of a false positive is something they will never forget and that the fear will never disappear. However, although parents may be traumatized emotionally, if screening is not mandated, newborns with Krabbe disease could go undiagnosed and they will be the ones who will be traumatized physically. Not only is Krabbe disease asymptomatic, but also it is also rare.
I think that ultimately if there is a chance of early detection of a disease, even if treatment is risky and has a low chance of success, it is still a treatment, and parents should be educated about it and know that whatever choice they make, they made it only after weighing every possible option.
Newborn screening has and always will be a controversial topic; there is no "correct" answer. In my opinion, education is the first step to everything, so I think that all parents should at least be aware of these diseases and have the option to screen or not to screen. This means that the state should be obligated to inform parents of Krabbe disease, but not mandated to screen. I think after parents know what Krabbe disease is and how serious it can be, the decision to screen is theirs. Since early treatment is the best option for Krabbe disease, I, personally, would want my child to be screened so that I could take all necessary steps to slow down the disease and lessen the physical and emotional suffering of both the newborn and family members. It would be worse to find out later that my child has been living with a disease and feel as if I did not do everything I could have done to prevent it. I am in favor of educating the general public about Krabbe disease and giving parents the option to screen and hear test results.
ReplyDeleteThe stakeholders are the families primarily. They risk the lives of the newborn. They also may have to deal with a lot of stress and trauma that may even be psychological. Also, they will probably have to pay a large sum of money in terms of insurance and treatment if necessary. The medical centers are also stakeholders. They finance the screening and treatment. If screening is done but not many true positives are there then they stand to lose money and credibility. Also, if anything goes wrong they are the first to get the blame from the families.
ReplyDeleteThere are a few ethical implications. First, the probable chance that not many infants will have Krabbe disease but putting a family through all the stress and trauma that comes with it. However there is the other side that if there is a screening and even diagnosis available, then to those newborns who may have Krabbe disease but will receive a later diagnosis that could be too late, is it fair to them to not implement early screening? Finally there is the financial ethical implication as you must see if the money that is put into screening and diagnosis is truly worth it.
One important thing to consider is the stress dealt to families. Every family has to deal with stress. There are those that have a positive screening but a negative diagnosis such as the Wojtestas. They went through a lot of stress and are still traumatized. They even remarked that the experience will always impact their relationship with their daughter Vera. It also must be considered the families who the screening could benefit. Jaylah, Hunter and others all have had to deal with a late diagnosis of Krabbe, to late to really treat. The infants certainly had a lot of pain, and the stress inflicted on these parents is brutal. It must be considered the number of false positives. There are many who are screened positive but diagnosed negative with Krabbe. False positives show that there can be unnecessary stress as well as a lot of money spent unnecessarily. It should be considered how prevalent Krabbe is in the population as this is a screening criteria. Finally, it should be considered if early screening and treatment can be beneficial. The article remarks for some infants later diagnosis can be too late. Dr. Escobar states with early screening the proper drugs can be implemented to at least ease suffering. However, the article states that the umbilical cord transplant screening isn’t the cure all solution. Of the 5 infants in NY who were candidates, one didn’t even have it while 2 infants died of complications.
Consdiering all these points I support early screening. True, the Wojtesta’s and others had to deal with unnecessary stress and finances. But one must consider the Kelley’s, Custer, Shaffer and Levasheff all of whom regret not getting an early diagnosis for their infant and who have to deal with such suffering. Dr. Escobar also says that early screening can be beneficial and ease suffering. However, if a improved method of screening and treatment can be made, this would be beneficial to deal with unnecessary stress on families and obtaining the best possible result.
I have always been in favor of screening for all diseases possible. This way the parents of the child can address any medical concern immediately. With certain diseases, the disease becomes severely worse and unmanageable if left untreated. In the case of Krabbe disease, I am support the screening for it. In 2005, cord blood transplants proved to benefit children with Krabbe. However, the transplant is only beneficial if the transplant takes place before symptoms occur. Therefore, the only way that this transplant is possible is if the baby is screened for it. At that time, babies were only screened for it if their sibling had signs of Krabbe. If all babies were screened for Krabbe, then these cord blood transplant could help lengthen their life, while lessening the physical symptoms and emotional stress. Dr. Maria Escobar makes a great point by saying, "families develop relationships with their children, and no matter what degree of disability they have, they treasure each day that they are spending with their children."
ReplyDeleteWith any new, complex disease education is critical. The parents as well as the doctors need to be on the same page in terms of possible symptoms, treatment routes, and life modifications due to the disease. By screening for diseases like Krabbe it forces doctors to educate themselves on the disease. This way they are not caught off guard if one of their patients' infant screens positive for a disease like Krabbe.
While I understand there are many negative affects associated with this screening, and that not many effective interventions and treatments are available to those who do test positive for it, I still feel that it would be more beneficial in the long run if all newborns were screened for Krabbe disease. The reason that so few effective treatments are available is because very little is known about the disease. Without screening, no data on prevalence levels or research could be conducted in an effort to improve the current situation. Without collecting this data, we would be effectively turning a blind eye to the disease and settling on its current prognosis. As a more better solution to the poor treatments available and mental difficulty that this could pose to family, my only suggestion would be giving them the option to not know the results of the test. If this were the case, valuable information would still be collected and recorded for public health agencies, and the family’s wishes would still be respected, should they choose not to know. I understand that this is a very difficult decision, but purposeful ignorance will not help to improve the current state that Krabbe disease treatment is in. In the long run, mandatory screening for infants could be very beneficial to the larger population
ReplyDeleteAfter reading the article, I can completely understand the dilemma regarding Krabbe screening. On one hand, testing for this neurological disorder may allow families and doctors to take the necessary steps to alleviate the symptoms of the disease and prevent death. However, the effectiveness of the current treatment for the disease seems to be somewhat questionable. When successful, the treatment can prevent death. Yet, when unsuccessful, the treatment can cause death. This treatment is clearly extremely risky, but if successful, a life is saved. Based just on this information, I believe screening should be mandatory. But unfortunately, there is much more to this dilemma.
ReplyDeleteThere is a less obvious negative aspect of the screening as well. Although screening can help with early detection and therefore proper treatment, having a newborn screen positive for Krabbe can take a devastating toll on a family. A positive screening informs the family and doctor that the child is at risk for this disorder, but it is impossible to know when the symptoms will begin and to what extent the disorder will affect the child. The disorder could take effect in the newborn, or not for a few years, or even not until adulthood. Knowing that your child may develop this disorder can be traumatic for a family. The constant looming threat of a devastating disease can take its toll. Constant worrying over the possibility of Krabbe is not a way most people would want to spend their time raising their child. For this reason, many people do not want their newborn screened for the disorder.
It is readily apparent that there is a major dilemma regarding Krabbe screening. The main question is whether the possibility of saving a life is worth the incessant worrying and the possibility that the treatment will be unsuccessful anyway. Ultimately, I believe I would want my child screened for the disorder because any chance at saving my child’s life is a chance I believe is worth taking. To me, saving a life outweighs the worrying. However, I do not believe that Krabbe screening should be mandatory at this point in time. If there are advances in treatment or technology that allow treatment to be more successful and much less of a risk, then I think it would be appropriate to make screening mandatory. But until then, I think the decision should be left to the parents.
After reading the article about Krabbe screening in infants, it becomes obvious that there is no clear cut answer as to whether this screening should be mandatory of not. Although it ultimately has been shown to save children’s lives, I am not in favor of mandatory Krabbe screening.
ReplyDeleteWhile the intent of programs such as “Hunter’s Hope” is in the right place, unfortunately our current knowledge about the disease and its treatment options leave too much unknown in order to be an effective prevention method. To begin with, the disease is fairly uncommon, as only 300 children out of the 2 million screened in New York have even been flagged as having the disease. With numbers so low, it makes it difficult to study the disease in an ethical way, as each screening must be considered “research” and thus requires parental consent. Additionally, although it can be of some help to newborn cases, the cord blood treatment is very risky and only somewhat effective. Ethically as well, the results (or lack of) can be very traumatic for families and children, particularly if they have the late-onset type of Krabbes.
Instead of making the test mandatory, I believe the best option moving forward at this time would be to spend more time and money in screening more babies for research instead of for telling the parents. This way, more could be learned about how to properly identify the disease and all its variations, and more effective treatments could be developed. After this, then I think it would be ethical and beneficial to implement mandatory newborn testing.