Sunday, October 27, 2013

Baby's First Test

CUTAG of the Week:


As adults, “Whole Genome Sequencing” is something we can do to find out more about our genes and predispositions we carry for diseases in them. When babies are born across America, they are required to do a “heel stick test”, testing their blood for diseases that if found early on, can be reversed. Whole Genome Sequencing in newborns is likely something that will become common place in hospitals, testing babies for not just treatable diseases they may have, but for predispositions to diseases that there may not be a known cure for. Do you think it is ethical to screen newborns for all genes, even those like breast cancer that do not have a definitive cure? If you were to have children, knowing that your baby is predisposed to an incurable disease, would your opinion of them change?

70 comments:

  1. Genome sequencing of newborns could prove very useful in making sure children are healthy. However, when we start testing for predispositions to diseases that have no known cure or treatment, we are actually doing a disservice. To place such a profound anxiety on parents and a child is wrong. It is not necessary to tell new parents that their child may or may not develop cancer in adulthood because, as the article states, the child becomes vulnerable and very well might not have a normal childhood. To rob someone of a sense of normalcy just because we have the ability to access our genetic code is cruel and not an ethical use of science.

    A PKU test has obvious benefits and a very well defined solution if a child tests positive. A test that does not offer any real benefit is futile. It is understandable that the couple in the article would not elect to know all the information about their child’s genome, because in reality what can they really do about it, besides common sense healthy lifestyle choices?

    I would not opt for a test that spells out my child’s genome and dooms them to a life of worry. Also, I would never see my child as unfit or less than perfect simply because something was detected. Genetic testing can be extremely useful but if used superfluously, it does more harm than good.

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  2. There are a lot of advantages to implementing genome sequencing of newborns. Doctors would be able to detect genetic conditions early, allowing for early treatment and a better chance of survival. It would also help the child's family prepare for future complications, and allow them to take steps in prevention. Finally, it could help with advancements in research.

    I would not say that it is unethical to screen newborns, but I understand if parent's do not want to go through with it. The anxiety that would come with a positive test for a disease without a cure would be uncontrollable. It would probably be the basis of how that family lives their lives. If I had a child with a predisposition to an incurable disease, I don't know what I would do. There is not much I would even be able to do. I would obviously still love them, but if I was anxious all the time, that might stop me from allowing them to have a normal childhood. The saying "ignorance is bliss" definitely applies to all children, and that would be taken away in some sense with genome sequencing.

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  3. I agree with everything Danielle said. I think that genome sequencing is useful for diseases that have a known cure and course of treatment such as PKU or other allergies, etc. However, when the outcome of a genetic test results in a predisposition to a chronic or terminal illness, I agree that these tests are not offering any real benefit. Instead, they produce enormous amounts of anxiety for parents and their children. Testing for a predisposition at such a young age seems kind of irrelevant to me because of all the factors besides genes that contribute to one's susceptibility, such as the environment and lifestyle factors. One may argue that finding out a baby could get diabetes or heart disease later in life would be beneficial because you could easily modify the child's diet and exercise patterns to minimize that risk. But the risk is still there even if you have the child exercise everyday and never feed him/her sweets. If there is no cure or definite treatment, then there is no way to eliminate the risk completely. Also, shouldn't kids be able to live a normal childhood without having to worry about all the different diseases they may get if they make say one "wrong" dietary choice. Children should not have to live in fear that they can never enjoy a slice of pizza or bowl of ice cream. That is too much anxiety to place on a child, who may not even understand what it means to even have a predisposition to diabetes or heart disease.

    And what about more serious diseases like cancer or Alzheimer's? Should kids have to grow up knowing that they will eventually develop this disease? I feel the answer is no because like Danielle says, it robs someones ability to grow up with a sense of normalcy. In addition, since these diseases have no know cure, why should you have to tell them at such a young age? It's not like you can prevent cancer or Alzheimer's, at least not right now. And even if you find out your child has a predisposition to a specific disease, it does not mean that the child will develop it indefinitely. Gene's are only one part of a multivariable system.

    Overall, I think genetic sequencing is useful when you are looking for a specific gene that is linked directly to a disease that can be treated and cured. In this case, genetic sequencing can make diagnosis and treatment a lot more efficient, accurate, and cheaper. However, when used in babies to sequence thousands of "predisposition" genes, I believe genetic sequencing is unethical because it does more harm than good to both the parents and the child who must live with knowing they might develop a terminal illness one day that they can really do nothing about. How is one suppose to live a calm, healthy, loving life with such information always in the back of their mind?

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  4. Elisabeth BellissimoOctober 27, 2013 at 6:55 PM

    I am generally in agreement with what everyone else has said above. I think that genome sequencing of newborns can be extremely beneficial in discovering treatable diseases or predispositions, such as SCID or PKU. And as I have mentioned before I think that parents have an obligation to their child to find out about these problems as early as possible in order help them live a long and happy life.

    However, in terms of sequencing the entire genome to find out whether or not the child has the breast cancer gene mutation seems a little bit unnecessary for a newborn. I think it would be too much responsibility for the parents to know all of this information about their child without being able to do anything about it. And as Christine Rowan said in the story, if parents knew all of this information, when would be the right time to tell their child? or should they keep the information to themselves as to protect their child from the emotional burden? There are many factors that must be considered in the case of sequencing the entire genome.

    With all of this said, if my newborn had his/her entire genome sequenced and was found to have a predisposition to an incurable disease, my opinion of them would never be changed. I would do whatever I could to make their life as comfortable as possible. As the NPR story mentioned, I think entire genome sequencing of newborns could lead to the very sticky situation of parents finding information out about their child and not wanting to deal with consequences. And if genome sequencing could be done to the fetus, I think that this would lead to even more ethical issues having to do with termination and/or picking and choosing what kind of child you want to have.

    In conclusion, I think that is completely necessary to screen newborns for treatable diseases, but there are issues with entire genome sequencing at birth which are enough to convince me that it is not necessary at that point in life.

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  5. I believe that the testing should be done for all genes for everyone. While the labs have the DNA available, they should test for everything known and keep the results. That being said, there should be standards for the information released. Parents should know about their child’s curable diseases as well as information for some preventative ones, like obesity and diabetes. Early information on these can directly impact diet and exercise for the child to make him/her healthier. Other information like breast cancer should be kept on file but not released to the parents. After the individual turns 18 they can choose to find out the comprehensive results whenever they wish.
    If my child had a predisposition for an incurable disease my opinion of him or her would not change. I accept people for all their shortcomings, especially the ones they cannot change. However, I would try to help my child make the best decisions for themselves considering their predisposed condition, as well as help them understand the implications of the predisposition.

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  6. I believe that genetic testing can breed positive results. However, this fear of having genetic tests can be harmful if doubt crosses our minds especially if we are the parents of those children with incurable diseases. The way we approach this issue of genetic testing in children is all within the eye of the beholder.

    Most of the results achieved with genetic testing should be taken with a grain of salt. In fact, genetic testing helps parents and the person who had the test live their lives. Everyone has an equal opportunity to live a life with opportunities. Knowing this information is only so that the person who had the genetic test can be wary of their disease or possibility of disease and live their lives accordingly by doing all they can to help themselves as they age.

    For these reasons, I believe that genetic testing is necessary and it should be used as a positive intervention. However, like I previously mentioned, genetic testing is all in the eye of the beholder. We can discriminate and live in fear or continue to live with the hope of living with a condition and treating it as it comes. It is rare for anyone to live his or her life without any medical issues to begin with. So why not that the initiative and test ourselves as well as educate ourselves about our medical issue? I would rather live my life knowing my medical problems, how to treat it than to live in so called "blissful ignorance".

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  7. It is not ethical to test newborns for all genetic conditions and diseases. This would create excessive worrying and fear, especially for conditions that are decades away from developing. As the article stated, there is already evidence that parents react negatively to an abundance of genetic information. As a parent I would want the best possible outcome for my child. The article highlights how knowing a child's genetic information could cause the parent to over-protect the child, putting them in a bubble of sorts. In my opinion, this is not the best possible outcome for a child. Children are care-free and curious and should be allowed to explore and develop at their own pace, without pressure to prevent genetic conditions they may be prone to. I value newborn screening, but only for conditions present at birth or that may express themselves during childhood. There needs to be a fine line drawn to determine which conditions these may be and genetic counseling needs to become more predominant in order to lessen the stress parents experience in regards to testing that affects both them and their child(ren).

    I would like to say that knowing my child's genetic predispositions would not change my opinion of them, but I cannot say this with confidence. As someone in the health field, I am more aware and educated than most in regards to these conditions. This may be a benefit or a hinderance to my child. Already my child will be more aware of health outcomes due to my profession. Exposing them or myself to anymore information regarding their health may cause excessive worrying and prohibit them from living a "normal" childhood as eluded to in the previous paragraph. As I mentioned before, there needs to be more research about which conditions are crucial to be aware of at birth and which ones can be omitted from newborn screening. There needs to be policies in place based on extensive research before we permit intensive newborn screening for all babies in order to avoid a re-occurence of eugenics and to allow children to have normal, worry-free childhoods.

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  8. I believe that testing babies with the Guthrie cards to test for PKU and SCID are very important methods that can help save a baby's life. I believe testing for these diseases is ethical. I think parents are obligated to provide the best life possible for their child and this includes making sure they are healthy or can improve the life quality of maybe a not so healthy child. These can be life saving techniques or even "quality" of life improving techniques. Parents who can test for some genetic diseases in their newborns are armed with the information needed to help their kids.
    With all that being said, I do not think that parents should have their children tested for diseases such a Alzheimer's and breast cancer. That could potentially ruin the baby's childhood and have the parents treat their baby like a "bubble baby". Alzheimer's and cancer have no cures and their is little the parents can do to prevent cancer and nothing they could do to prevent Alzheimer's. Knowing their child had this just puts the parents in a worry inducing spot. If the parents prevented their child from living a normal life because of the threat of a future disease, this would not create a wonderful quality of life for anyone in the family, which takes away from the point of genetic testing of trying to improve quality of life for those who are sick by finding diseases or threats early on.

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  9. After reading the article and some of the comments above, I agree with a lot of what Amanda and Danielle have to say. Full genomic sequencing for newborns is a tool that has many advantages, but at the same time it brings almost too much knowledge. Genomic sequencing should be used in order to discover what curable or treatable diseases a baby will have or will be predisposed to. This way the treatments could be as efficient as possible, and much of the discomfort and suffering associated with illness could be avoided. However, this becomes more controversial when the results tell parents that their baby is predisposed to an incurable diseases. This could cause unnecessary worry in parents and for the baby as he / she gets older and learns that they are at risk for an illness that they will not be able to prevent or treat.

    I think that Chris makes a good point when stating that the newborns should be given the option to learn about their results when they turn 18. I understand Amanda's point that the knowledge of being predisposed for a certain disease could cause unnecessary worry and distress over something that is not even guaranteed to happen because there are so many environmental factors involved, but this is why I think it should be necessary to know about all of the results. If you know your child is predisposed for a certain disease, you would likely try to guide them through life in a way that decreases the chances of the disease actually occurring. They wouldn't need to avoid every little thing that could increase the probability of the disease, but being wary about it would be vital for the future of the child. If I had a baby that was predisposed to an incurable disease my opinion of him / her would not change, but I would definitely learn more about the condition and how to prevent it ever happening. This doesn't mean that I wouldn't let the child eat a burger if they had a predisposition for heart disease later on in life, but I certainly would begin to instill the idea of moderation and how too much of anything could be detrimental to your health. I wouldn't let the predisposition completely change the way I lived my life or how I'd raise the baby, but I would feel much safer with the knowledge that I can now do whatever I can to prevent the illness.

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  10. I am completely for testing newborns for all diseases, as in "whole genome sequencing" does. I understand that things like breast cancer may be less important to screen a newborn about seeing that it wont develop for a while compared to things like SCID, but I do not think it would do any harm to have them tested for it anyway, and as Chris said, allow them to find out their results when they turn 18. When they turn 18, they can make the choice on whether they'd like to know their test results or not. If they don't want to know their results, I don't see how any harm was done.

    If they do want to know their results, as a parent, I would help them to make the decision that I think is best for them and for the health, however, what they ultimately decide is up to them and I would not force anything upon them. If I were a parent, though, I would definitely choose to have my child screened for everything because I really don't see the harm in it. As a baby, they cannot make that decision themselves, so why not go through with everything and allow them to decide if they'd like to know when they're older and able to make those types of decisions for themselves.

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  11. Genome sequencing for newborns should be left to the discretion of the parents. For some, it might be a relief to know that their son or daughter is predisposed for a particular disease. Rare genetic conditions would be diagnosed very early, enabling early treatment. This is advantageous for those who feel it's necessary to have the maximum amount of knowledge about their child available. This includes any sort of genetic information that could alter the way they raise the child, either in a good or bad way.

    On the other hand, I would imagine that many parents do not prefer to know ahead of time whether or not their child will develop certain diseases, especially incurable ones. It would create unnecessary anxiety and stress for the family to know future poor health for the child. Genomic sequencing would also add a challenge for parents who would eventually have the responsibility of telling their child that they have or will have a disease. Normally, this duty is left to the health care provider, and I think it would be significantly more difficult to inform the child as his or her parent.

    Of course, if I had children I would want to be aware of their potential health risks, but I would not treat my child any differently than if they did not have the predisposition to the disease. Everyone deserves to live their life to the fullest, no matter their limitations or circumstances. It is the parents' responsibility to provide that for the child.

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  12. Whole Genome Sequencing for newborns is easily a controversial topic. Personally, I believe that screening for diseases such as PKU, and other disorders that will have a significant impact on the child’s life if detected and treated early, is essential. However, if the disease can only be detected and does not have a cure, is late onset, and is not manageable in any way, I would seriously reconsider the value of testing for such diseases – especially at birth. When it comes to diseases such as breast cancer, and Alzheimer’s, that can’t be managed or treated at such a young age, I believe that newborns shouldn’t be tested. I think the decision as to whether they want to know this information should be their own once they are older and can make such decisions autonomously. A parent or medical professional can’t know whether the child would want to know such information in the future. Knowing information when the disease is treatable and when it isn’t makes a big difference when looking at the whole genome sequencing debate in newborns.

    Knowing that my child was predisposed to an incurable disease wouldn’t change my opinion of them, but would likely affect the way I care for my child. As the article mentioned, the child may not grow up with a typical childhood – naturally any parent would try to protect their child from any environmental factors that may worsen their predisposition. This also raises concerns regarding testing in the womb – would some women wish for an abortion if their child could be predisposed to a disease (without 100% certainty)? Thus, as technology and science advances, these are all questions we will have to consider.

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  13. The medical advances made in genomics today has given parents numerous options for their child as well as their livelihood. As a result, the ability for my child to be screened when born is a major advancement in prevention and speedy diagnosis. Although I would have the option of having my child tested for thousands of diseases and predispositions, I would not want to have to do it. I would not want to have the burden placed on myself and my child from the moment they are born. I believe that certain NBS is necessary such as PKU, SCID, hypothyroidism, etc. but I do not think I or my child would want to know they were predisposed to breast cancer or Alzheimer's. Certain screening should be done in order to catch certain diseases that would be fatal if my child did not test for them soon but for longer, more chronic diseases, I would let my child make that decision on their own when they reach 18 or whenever. It is their life and if they would like to know, I would only hope that they make an informed decision and know all the pros and cons to getting a genome-wide scan. I would not treat my child any differently if I did find out they were predisposed to a certain disease as they are my child and the disease does not define them.

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  14. With the option of now being able to sequence a newborn's entire genome to screen for more genetic conditions, I believe the cons outweigh the pros. Yes potentially catching more rare genetic conditions at an earlier age would save lives, but also knowing too much may be detrimental. As a parent I would worry about my child's health considerably, as well as ruminate over thoughts of guilt and of when to discuss genetic conditions found within my child. Thus, I would not choose to sequence my newborn's whole genome. Instead this would be an informed decision he or she could make at an older age.

    In terms of my opinion about a newborn if a genetic disorder is found, it would not change whatsoever. I do not define people by physicalities but rather I try to accept individuals as they are; both the good and the bad. My newborn would be loved unconditionally, no doubt in my mind.

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  15. I think that newborn genome sequencing is very useful for diseases that have a known cure/treatment, such as PKU. This is especially important if the treatment is more effective the earlier it is administered.

    I agree with what Danielle and Amanda said: If we tested for diseases that had no known cure, we would actually be doing those families a disservice. If the child did test positive for such a disease, there is nothing for the family to do but worry. And then they would also have to deal with when and how to tell their child that they're doomed because they have a gene for such and such untreatable disease. Doing so will also lead to parents feeling overwhelmed and confused by the amount of genetic information they're getting.

    If I were a parent and my baby tested positive for an untreatable disease, my opinion of him/her would not necessarily change, but the way I treated him/her would be different than how I would tresat a child who was "normal." It's not that I would love my child any less than if they tested negative. I would definitely love my child unconditionally. However, I would just be constantly worried and a lot more protective about my child. Kids are very physically active and I would probably worry all the time about recess time, physical education classes, or their participation in team sports etc. As a "medically vulnerable" child, I would probably restrict my child from participating in some activities because I would be so worried. And then I would feel guilty for possibly being the cause of my child's disease, and for preventing my child from having a "normal childhood." Because of these reasons, I would be okay with genetic testing for curable diseases, but not fordiseases with no cures.

    Another thing to consider -- genetic testing is never 100% accurate. Just because you have a gene for a disease, doesn't mean you'll develop that disease. Things like environment and diet could affect your susceptibility.

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  16. I do not think it is necessary to screen newborns for all possible health conditions. If there are certain concerns from the parents; for example, suppose the parents know their respective families have a history of a certain health condition that is treatable to an extent, they should go ahead and get screening for their newborn child. As much as there are positive outcomes for newborn screening, such as prevention methods and lowering the likelihood of going to the emergency room, which means spending less money; I would say the negatives outweigh them. I know this is not how everyone feels, but personally, I think that it is best not to get my newborn screened for all their genes because how life takes its course is not completely in our hands. One thing I would like to make clear is that I would never judge other people for the decision they would make regarding newborn screening, rather this is simply how I feel. If I was to find out that my child is more prone to certain health conditions it would cause us to live in some sort of fear or anxiety. I think it is better to deal with something once it happens. Living in constant stress and anxiety could actually make things worse, including bringing about a certain health condition that the child is predisposed to. That being said, I feel that I would have to tell my child at some point after childhood because after all it is his or her DNA, they have a right to know. I would not want to burden a child or adolescent with this kind of information. I wouldn’t want it to affect their functioning and mental health. We can only deal with what is going on now, we cannot deal with something that has not happened. I think leading a healthy lifestyle from the time the child is young will help in the long-run anyway. If I was to find out that my child is predisposed to an incurable disease my opinion of them would not change. I would still think that they are just as capable of achieving their goals and dreams as anyone else. They deserve it just as all humans do. I cannot deny that I would probably be more aware of being apart of my child’s life and help them even more than I would have otherwise. In the end, I think that no matter what we know about our gene sequences, we are the same person and we are given this life to live to the fullest, and that is what we must strive to do.

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  17. While the idea of whole genome sequencing seems novel and even quite useful for adults, I don’t think that it is currently appropriate for newborns to be sequenced immediately after exiting the womb. I understand that many parents would like to know as much about their newborn child as is humanly possible, but what many who are for newborn sequencing do not realize is that this amount of information coming in all at once can be overwhelming. Becoming a new parent is stressful enough especially if it’s your first child, and the thought of being handed a few sheets of paper outlining how your child will live and die before you have seen their first birthday would make most parents’ heads spin. On the other hand, newborn screening is a very important procedure which can detect many debilitating yet reversible conditions which can sometimes be avoided with only a small change in diet within the first few months of life. The central problem it seems, with whole genome sequencing, is that it covers everything and nothing all at once. Granted parents will be armed with limitless information about their new child, but at the same time all they will have is information. Many of the disorders and conditions which can be identified with whole genome sequencing either have no cure or cannot be definitively diagnosed for decades after the child is born, effectively causing parents undue amounts of grief for no practical reason. In fact, from a practical perspective, the only people who truly benefit from the whole genome sequencing of newborns are the for-profit companies who provide the service at an enormous cost to parents. It is my recommendation that instead of recommending that babies (or even fetuses) be sequenced, the biomedical community should work towards developing more tests which can be included on the same Guthrie card which has already been saving lives for decades.

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  18. I think the rules for genetic testing on babies should be in coordination with Wilson and Jungers Screening Criteria. Firstly all conditions begin screened should be important health problems, which is basically a given. I Also feel that everything being tested should be warranted by the ability for it to be treated or prevented affectively. The article mentions cancer and diabetes as possible genetic tests. Something like diabetes would be beneficial to test the infant so that the parents know going forward that they should keep an eye on the childs health and BMI so that they could prevent the onset later in the kids life. In terms of cancer, unless they somehow find a preventative method or cure then I do not think that test is in line with criteria number 4: "treatment at early stage should be more beneficial then later". As far as I know, there is no way to prevent cancer or do anything about it at the infant stage so this test can be held off. I also feel that since this is a kid the parents are deciding to bring into the world then it should also be the parents decision if they want to go ahead with the infant testing or not. However, the accept ion to this is if the parents are not in the proper mental health state to be making sane decisions then it would most likely be held to the discretion of the doctor. The way I see it is, if theres a disease you can find out about and DO something about to better the life of your child then why not go ahead and take the steps to do so. In terms of when to tell the child about their DNA being available, I think eventually we are headed towards a world where this will be the norm and people will grow up expecting this and feeling comfortable with it. With this being said, before we get to that point we need to make sure laws like GINA and other privacy/ cultural issues are followed and solved before making it a norm.

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  19. I can understand why full genome sequencing of newborns seems appealing. It gives us so much information that could change a newborn's life. The information from a full genome sequence at birth could help the child avoid disease in the future and the opportunity to lead a more fulfilling life. Sequencing could help bring down health care costs as preventative measures begin to reduce disease prevalence especially for chronic disease. While all of the benefits are great, I cannot fully get on board with newborn genome sequencing. I truly believe that disease that will not appear until later in life or cannot be cured should not be sequenced, or at least the genetic information should not be given to the parents. This kind of information will cause undue psychological burden on both the parents and the child. I think it should be the child's choice once they reach a consenting age because that is when the diseases will effect them. I almost see giving that kind of information, when the disease will not appear until later age, as a HIPPA violation to give it to the parents. If a 18 year old does not want to tell her parents about a medical condition, she/he is not forced to disclose this information. If a newborn's genome shows that they may develop Alzheimer, or even a type of cancer not associated with childhood, I think the child should have the option to disclose this information to his/her parent. Overall, I think genome sequencing at birth will raise a lot of ethical issues and should be pursued with caution.

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  21. I do not think that it's ethical to screen all newborns for genes, specifically an entire genomic sequence. Parents should have the free will to decide if they want to screen their children's genes, and children should be able to provide consent if they would want this information out in the world (which clearly they cannot do as a child).

    For diseases that may not have a cure- such as breast cancer or more severe genetic mutations, parents may not want to know this information because it could cause psychological stress. If I were a parent and knew my child had some type of severe disease I would hope that I wouldn't view my child differently, but there is no way to know this for sure unless I am in this situation. A parent may feel bad for their child knowing that there is no cure for their disease and I don't think that it's necessarily ethical to pose this unnecessary stress until at least a later point in a child's life.

    Although I do see the preventative benefits of screening for genes, overall I feel that there may be more cons than pros. It is a personal decision and not something that I feel could be made a definite policy one way or another.

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  22. I think that screening newborns for genes on the entire genomic sequence is unethical because there is no informed consent included. I think the choice should be left up to the parents to decide whether they want their newborn screened. The parents should be told all information about the screenings and possible implications that could come about.

    For diseases with no cure, it is unnecessary to tell the parents this information until later in life when it would be a problem. It causes stress and unnecessary worry for the family when the child is at risk so far in the future.

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  23. Although there are numerous potential health benefits of sequencing a newborns entire DNA, I don't think it is ethical nor necessary at that stage in their lives. I think parents have the right to undergo testing of their children for certain genetic disorders they may have a family history of or are particularly concerned about in order to provide prevention and treatment for their children. However testing for the hundreds or even thousands of other conditions that may have late onset or are incurable will pose a major ethical issue for parents in deciding when to tell their children about their predispositions and how they view and treat them. Personally, I feel that if I were a parent, knowing this information would be overwhelming and I would be concerned that the effects it could have on my children may lead to Rothstein's "vulnerable child syndrome" and furthermore, psychological and emotional distress. Until current technology has improved and medical treatments have advanced, I think we should use caution and move slowly with genetic testing, only focusing on those conditions for which testing has proven health benefits and outcomes for children that outweigh the risks and other implications.

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  24. The idea of having one's entire genome sequenced is grand and amazing, something we would have never even considered just a few decades ago. However, genome sequencing may extend itself to lead to more information that a person or family may want to know. I am in full support of newborn screening, the life-saving method that uses dried blood stains from Guthrie cards to screen babies from many disorders and conditions such as PKU, hypothyroidism, and now SCID as we learned about in class. I think genome sequencing for newborns presents parents and and families with too much overwhelming information, about diseases and disorders, some of which can be cured and some of which cannot be cured. I don't think it would be right to tell new parents that their child may have some disease or condition that is currently untreatable, as it would obviously cause parents to stress out and potentially even cause the child to not have a normal childhood, as stated by the "vulnerable child syndrome". However, screening for diseases in newborns that can be cured and are treatable should definitely be conducted to the full extent. As technology advances, doctors should screen for diseases that become treatable. Parents should also have the choice as to whether they want their newborn's genome to be sequenced or not; and if not, children should have the choice about whether they would like their genomes to be sequenced, when they come of age.

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  25. I do not think it’s ethical for infants to be whole genome sequenced. This brings on unnecessary anxiety for the parents, who in some cases, won’t even be able to do anything about it. I think parents need to enjoy their time spent with their children and allow them to live a normal life, rather than worrying about genetic predispositions that might be down the road 40 or 50 years from now. One of the points made in the article was that sequencing the newborn could spot babies prone to conditions such as obesity, diabetes, and heart attacks. However, parents should be encouraging their children to eat healthy and exercise despite what their genetic predispositions are. In other words, you don’t need the fear of your genes to tell you how to raise your children; your parental instincts should keep them healthy. Another good point is that “parents may let their anxiety and confusion affect their reproductive choices in ways that they would later regret”. I think it would be very unfortunate for a couple to decide to not have children just because they are worried about genetic predispositions their child might have. We live in a world where we don’t like to leave things for chance and want to know everything, and I find this upsetting; it’s important to live each day without worrying about what could possibly happen in the future. If I knew that my baby was predisposed to an incurable disease, it would definitely change my opinion, and that’s why I would never want to know. You have to let life play out its course and deal with each situation when it comes. If I knew, I would try to protect him/her and probably end up being too overbearing. I don’t see how anyone could live a happy, anxious-free life if they were to know their child will have an incurable disease.

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  26. I think knowing about diseases may be helpful. However, I don't think testing for diseases without cures is necessary. As a parent, you don't want to hear that your child is going to have breast cancer in the future. This will only make parents overwhelmingly cautious with their children by putting kind of a deadline on how long the child will be with them. It may cause them to be depressed and lose hope in that child. Yes, it can help them be proactive, but hereditary diseases are usually not preventable and diseases that comes from your environment would not be tested for so you are still at risk for many other diseases. Some diseases, you'd need to know about, like sickle cell but they are both with those diseases. It would just be to overwhelming to have that information especially on such a happy day.

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  27. I do not think that it is ethical for hospitals to require newborns to get tested for genes that can impact diseases that are not treatable. For example, in the article the mother is put in a situation where if her daughter tested positive, she would not know when and what age she should tell her daughter that she has this disease.

    Also, I believe in prenatal testing because parents can prepare for any diseases that the newborn may have. This means preparing the correct nutrition for the child, the right environment, and the correct medical steps needed to promote the child to be the healthiest he or she can be. I have heard a lot of stories of early preventative measures that helped children in the long run. However, I do not believe in the termination of a fetus if a defect is found. My reasons are that the child is still a living person and does not deserve to die before he or she has had the chance to live. Also, prenatal tests are not always correct. For example, one of my classmates from high school, according to a prenatal test, was supposed to have down syndrome. But, she came out to be a healthy person.

    If I found out that my future child might be predisposed to a certain incurable disease, I would not think anything different of that child. I believe that with the right kind of nurturing, the child can still live a fulfilling life.

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  28. First and foremost, I do not believe it is ethical to screen newborns for all diseases, especially those that do not have a definitive cure. Second, these screening tests are not 100% accurate and will lead to more false positives that can have a profound effect on families. While certain genes might create a predisposition, we are not slaves to our genes. The disease might not even develop in the future. And third of all, I believe it may be too early to find out if a baby is a carrier for a certain disease as it will lead to early stress and concerns for the family. If a disease is not curable, why test for it? Why would a family want to go through the anxiety and unnecessary stress if they can’t do anything about it? Aren’t certain things better left unknown? I agree with everyone above who said testing babies for incurable diseases could ruin their childhood. I think by knowing if your child has the predisposed gene for certain fatal disease will put you in a position of overprotecting them. If we cannot do anything to better their lives, we should just let them live a “normal” life and let them decide later on if they want to test for a certain disease.

    On the other hand, using Guthrie cards to test for PKU and SCID (or other curable diseases) are beneficial to the baby as there are treatments for these diseases so testing for those should be mandatory.

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  29. Even though we have the ability to sequence entire genomes, I do not think it’s ethical to screen newborns for all genetic diseases. Newborn screening tests like PKU are essential because early detection could be the difference between life and death. In addition, if detected early, PKU can easily be treated with dietary restrictions. Genetic diseases that can be detected through whole genome sequencing, but do not have an effective form of treatment would just cause stress and anxiety for parents. Furthermore, whole genome sequencing infringes on the autonomy of newborns, who in the future, may not want to know the information that was collected from their genome. Therefore, the decision should not be left up to the parents or the physicians involved.

    Knowing that my child is predisposed to incurable disease would just cause pain and heartbreak. I would be consumed by guilt and worry and consequently, be overprotective of my child. I would love and cherish my child nonetheless, but I would be living with a constant fear that my child would not get the chance to live a happy, worry-free life.

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  30. I agree with many of my fellow students. I strongly believe it is unethical to screen newborns for all genetic diseases. While it is good to screen for fatal but treatable diseases, I would not want my child being discriminated for their genes. Also, screening tests are not 100% accurate and a false positive will cause unnecessary stress among parents. In addition, genetic information is not secure. The child's data may leak into the hands of insurance companies which makes it difficult for the child to gain access to insurance. Also, genetics is not definitive. Environment and nurture has a big impact on the baby's health and growth. The diseases they are screening for may not even manifest. I would rather give my child the live then worry every day.

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  31. Earlier in this discussion, Gianna mentioned the Wilson and Jungner criteria that we were given in class. I think that they provide excellent guidelines for screening that we can use in determining the ethics behind newborn genome sequencing. If the condition is not an important health problem, or if there is no accepted treatment for the problem, then it makes no sense to test the newborn for the disease.

    If I had baby, and I discovered that he or she held a gene for an incurable disease, my "opinion" of them would not change. I would hope that my unconditional love for them would overcome any feelings of shame or frustrating. I don't believe that a baby should have a decision, such as discovering if they will contract an incurable disease, made for them without their consent. I believe it a decision that individuals should make for themselves, once they are older. I wouldn't want to grow up knowing that I had an incurable disease. However, if the disease strikes in childhood, then perhaps it would be appropriate to know, but careful consideration with a genetic counselor must be utilized.

    Overall, I do not think it is necessary to screen ALL newborns for diseases, especially if the parents do not want it. But, hopefully, in the coming decades, we as Americans will develop a greater collective understanding of genetics, and what knowing our genetics can and can't do for us.

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    1. Alex,
      I think that what you pointed out about the Wilson and Jungner criteria including that acceptable treatment for the disease or health problem is fundamental. Also, as Dr. Chan pointed out in class, even though not all newborn screening tests are based directly off the Wilson and Jungner criteria, they are all pretty much derived from the criteria. With that, the ethicality of such tests as whole genome sequencing, scanning for incurable and untreatable diseases such as Alzheimer’s, becomes clear.

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  32. I don’t think it is ethical to require a test such as this. I think it is something that can be provided as an option, but way too controversial and muddy of a procedure. One thing that needs to remain consistent is autonomy of patients, and their right to self-determination. When talking about newborns and minors, their parents seek after this right. In this situation, parents should have the final say in whether or not this testing should be done. Unlike the Guthrie tests, there are no real criteria for testing. With current newborn screening, some main requirements are that diseases being tested for have a cure/treatment, and that early detection greatly increases the probability of a successful outcome of treatment. These are extremely important and something that is lacking in GWA. In testing for things that have no cure, and are debatable about the positive impact regarding disease outcome. As humans, we have an incredible capacity to worry, and to let that consume us. In the case where things can be found that might be detrimental to our or our children’s health and nothing we can do to influence the outcome we would worry so much that it could cause us to miss out on life. I liked the example provided where if kids have a predisposition for illness, they can be confined to a corner while other kids are out playing. The tendency for parents is to worry, and in some cases this could cause their kids to be robbed of the opportunity to live at all as a result of something that is no more than a worry. There is also the issue of what to do with the information that you have once you have it: can you tell your kid, if so when, and how, and what is the result? Finally, you cannot unlearn or un-hear something no matter how unpleasant.
    I would not think of my children any differently. I would be faced with the worry stated above, but it wouldn’t change my perception. I would prefer to act the way the people in the article did. If there was anything of dire interest and something that can be “fixed” such as trouble breathing and sleep apnea I would test for that, and only that. I would not want the pressure of knowing anything else. I have often been told to not ask questions that I do not want to know the answer to. This is one of those questions.

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  33. I am not at all in support of whole genome sequencing for newborns. If a family decides they would like one, then I suppose there should not be any legalities to stop them (although in some ways they are toying with the fate of another person without their consent). WGS should certainly not be required or even highly recommended for the general population. This opens the door for way too many possible problems to come rushing in. As Rowan states it would open “a can of worms”. Especially with diseases that do not have a definitive cure or will not manifest until much later in life you are simply setting that child up for a life of living in fear and apprehension. It would be even worse if hospitals began WGS for children still in utero. I am pro choice when it comes to abortion, however, we should not be including genes into the decision-making. Like the article pointed out: this allows for people to begin selecting their children based on athletic ability or intelligence. This sets up a situation where people are making designer babies. This just feels unethical and creepy to me.

    My opinion does not change if I were to find out my baby was predisposed to have an incurable disease. If it is incurable, why do I need to know and worry about a disease that has not even yet manifested in my child, and may never manifest in my child. This seems highly unnecessary, especially for a time that should be so wonderful for new parents.

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  34. While there are many advantages to implementing genome sequencing of newborns, I do not think that it is a good idea. Even though doctors would be able to find malicious genetic conditions early on and possibly give a better chance for the infant to survive in some cases, the tests that look for chronic and uncureable illness do not serve any real purpose. While I would not go so far as to say that this genetic testing is 'unethical', I don't think that I would want my child to have tests done on him or her. In my mind, the potential for the emotional issues that could arise from a positive test, far outweighs simply knowing that you are at risk for a disease for which a cure does not even exist. My opinion of my child would not change at all, but I would be very worried about their mental state knowing that they are at risk to possibly develop a terrible disease in the future.

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  35. I do not think that it is ethical to screen a child's entire genome and telling the parents that their newborn has x amount of diseases. This is even more unethical when the majority of these diseases do not have cures. I believe that it is not necessary to be screening the entire genome at such a young age. I think that only certain genes should be screened for if symptoms are already manifesting themselves at the time of screening. It is also unethical because it will give the parents much anguish for nothing. Especially in cases where there are no cures; being ignorant of its existence before it develops would definitely be better on the parents and the child.

    If I had an entire genome sequencing test done on my child, I would like to say that my opinion of them would not change but I think that that is unrealistic. Especially in cases in which the disorder is severe; I think I would treat them differently than if they did not have that disorder.

    I think that just because the technology is available does not mean it is good and that we must make use of it. I think we are over-reaching in this case and that we need to scale back and realize that we are dealing with other people and we can't just see them as genes and numbers, but as individuals with their own lives.

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  36. I believe that screening for treatable and curable illnesses, like PKU or SCID, is definitely useful and I believe that technology should 100% be utilized because it can yield a positive result. That being said, I really do not think it is necessary to screen a newborn's entire genome. I think it is completely unethical and puts too much unnecessary anxiety and stress on a parent, especially when it comes to the illnesses with no cure. What good is it to tell parents that their child is at risk to develop Alzheimer's? It would cause the parents to worry and would just have them forever questioning if they should tell their child. Also, there is not even a cure so there's absolutely nothing the parents can do with the information except just think about it.

    I think it is amazing how technology has developed over the years but I don't think we need to use it as much as possible just because we have it. I also think that entire genome sequencing will "open a can of worms" as Rowan said. If parents know certain information, they may choose to terminate their pregnancy, which is the parents decision, but I think people would start choosing their children based on other things, such as athleticism or intelligence, instead of incurable diseases just as the article states. That would be extremely unethical and a line needs to be drawn somewhere.

    If I found that my child would develop an incurable illness with entire genome sequencing, my opinion of him or her would not change. But, I would have the illness on my mind a lot. There's no way I would be able to stop worrying about a severe illness my child would get in the future, which is exactly why I think entire genome sequencing is unethical. It's just so unnecessary to put so much anxiety on a parent involving something that is completely out of their control.

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  37. This is a very challenging topic to answer, and I don't think that there is one definitive answer. On one hand, full genome sequencing of newborns can be extremely beneficial and can lead to prevention/curing of certain diseases. On the other, just knowing the information in itself can be very taxing emotionally and personally, for say, if you knew your child was predisposed to breast cancer. My opinion is that full genome sequencing of newborns should be an option, but not mandatory. I also believe that parents should have the ability to choose what bits of information they would like to know. For example, if parents want to know if their child is predisposed to obesity, then they can make conscious health choices to benefit their child. But parents may not want to know if their child is predisposed to a disease such as Alzheimer's, as this could be psychologically stressing for the parents.

    Personally, it is hard to say what I would think if I knew that my child was predisposed to an incurable disease. I want to say that my feelings wouldn't change, but deep down I think I would treat them a bit differently than if I did not know that they were predisposed. I also think that I would prefer not to know if my child were predisposed to an incurable disease.

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  38. I found this article to be very interesting. There were a lot of valid points made in this article that could reasonably argue both aspects of the issue. The idea of knowing all of our predispositions and potential risks for diseases through whole genome sequencing, whether as an adult or a newborn, has raised a lot of logical and ethical questions. Many people argue that they would definitely want to know what they are predisposed to so that they can arrange for ways to make changes in their lifestyle. Others feel that this would cause too much unnecessary anxiety. I think that the same questions can be raised for both doing these tests as adults and as children. On the one hand, sequencing the genome would give parents a better understanding of what to expect, as well as give physicians an early start to monitoring, preventing, or even treating certain conditions. However, is it really worth it? The article quotes a sociologist from UCLA, Stefan Timmermans, who makes a great point. The idea of it all is fantastic, but since it just identifies risks and isn’t a guarantee, there could be a huge burden of worry and stress placed on the parents. Also, when would or should the parents tell their children that they are predisposed to a certain condition or conditions?
    It is really hard to assess whether doing this sequencing is ethical or not. In one way, it can be seen as a violation of autonomy. What if the child didn’t want to know? The induced stress from knowing the risks of developing certain diseases can cause one to miss out on or not enjoy their childhood. If the parents, or even the child, are always worried about getting sick, it will be harder for the child to try anything new or put him or herself out there. However, if the child is at risk for developing a certain disease, and the parents don’t do anything they can to find out, prevent it, and protect their child, are they considered bad parents? In my opinion, I don’t think that it is ethical to do the screening for a child. I know it is a tough decision, but I think that the induced stress on the parents and the child throughout his or her developing years could cause more harm than good. If I were to do this sequencing and find out that my child was predisposed to an incurable disease, my opinion of the child will most certainly not change. However, I will do everything in my power to make sure that my child is safe and sound. I will make sure that he or she develops a healthy lifestyle and is well educated in the risks of their predisposition.

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  39. I believe that if genome sequencing was standard, it is ethical for people to know if their child was predisposed to incurable diseases. It may have potential psychological effects, but I believe that knowing is better than not. People will consciously choose to live healthier lifestyles when they know that their risks decrease if they do. I would definitely have the tests done for my child, even when there is a risk of finding out their predisposition. There could potentially be treatments for their disease by the time they start developing symptoms. I believe that not being tested does way more harm to a child than if they get it done and find out a negative diagnosis. However, it is definitely easier said than done. I do not have a child and do not yet know what it is like to have a child. Maybe when I get there, my opinions will change but for right now, I think that it is ethical to sequence newborns.

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  40. I think that whole genome sequencing for newborns could be a great tool for treating premature infants and newborns with obvious signs of illness at birth. This sequencing could cut down on time spent searching for treatments for these vulnerable infants. That being said I do not think it would be appropriate to sequence the entire genome of every newborn. Not only would this measure be financially costly, it could also be psychologically costly during a period of time that is already overwhelming for new parents. Sometimes ignorance is bliss. There is no need for parents to bear the weight of knowing their newborn carries the BRCA gene mutation or a gene mutation which increases risk for Alzheimer’s disease. These are currently diseases without cures and this knowledge would only serve as a stressor for parents this early in a child’s life. The current newborn screening tests serve to protect newborns from many immediate threats to their help. I am sure that some sort of genome sequencing could be integrated into newborn screening however full genome sequencing for all newborns does not seem necessary to me.

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  41. Do you think it is ethical to screen newborns for all genes, even those like breast cancer that do not have a definitive cure?

    I personally do think it is ethical to screen newborns for all genes. Even if a cure doesn’t currently exist for a disease, it is possible that for many of these conditions that can be caused or exacerbated by genetics a cure will be developed in that newborn’s lifetime. Furthermore, it is important that if a child is predisposed to a disorder, that preventive measures are taken, which can only be done if the parents and health care providers are aware of these predispositions.

    If you were to have children, knowing that your baby is predisposed to an incurable disease, would your opinion of them change?

    Of course my opinion of my child would not change, I would simply make all of the necessary efforts to help my child live life to the fullest and be prepared for the challenges ahead of them. The NPR article assigned for reading this weeks talks about the possible termination of pregnancies based on genetic disease that is likely but not guaranteed solely by genetics, and I can understand that some parents would feel unable to care for a child with special needs, but I would personally never love a child with a genetic disorder any less and I would not terminate a pregnancy, especially due to the fact that a genetic predisposition does not always guarantee disease.

    Shanika Gilmour

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  42. I don’t think it is ethical to do whole genome sequencing on newborns at birth. I think that the information received from these tests will cause serious distress for parents and will change the way they go through parenting this child. I can’t imagine knowing that my child is predisposed for an incurable position and living with this information day by day. Just because we have the technology to sequence genomes, there are too many implications for the outcomes to make it a standard procedure.
    I think that the screening we do now, for 30 or so diseases is ethical because these diseases could have a detrimental effect on the baby’s life in early years, therefore knowing the information of the tests are beneficial to do early intervention.

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  43. Whole genome sequencing for newborns is ethical provided a number of contingencies are met. The information gained from the newborns genome can be used not only to diagnose diseases or disorders that they currently have, but to take preventative measures for future diseases. Wouldn't any parent want to know that their child is predisposed to leukemia, in order to take steps to lower their susceptibility and have them screened frequently? However,it is essential that information about the newborns genome is kept confidential, and is only taken upon the parents' request.
    If my child were to be diagnosed with an incurable disorder, it would certainly effect the way that I think about them. I am not able to say exactly what that effect would be on the relationship, nor do I hope that I will ever be able to. There are few things that are more terrible for a parent than losing a child, knowing that you are going to likely would draw the pain out longer.

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  44. I could only comment on the ethicality of whole genome sequencing in infants from the prospective of me being a parent or expectant parent. I say this because, even with science and public health education, if I could not see a test or intervention as ethical from the point of view of those who will be using it, then I do not think that the test or intervention could be deemed ethical. That said, I would not want to know all of my child’s genetic predispositions to certain diseases, specifically ones that occur later in life and especially those for which there is not cure. As the NPR podcast discusses, this could lead to “vulnerable child syndrome” resulting in the child not only potentially fearing for the future, but also not being able to enjoy his or her disease-free childhood. I do think that there are obvious benefits to newborn genetic screening and testing, however, I do not think that whole genome sequencing is necessary, particularly efficacious, or ethical. As I see it, the risks and potential harms outweigh the possible benefits.

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  45. A heel stick test is one thing, but a whole entire genome sequencing on a newborn child may demonstrate to be more detrimental than beneficial. It is tricky though. Perhaps finding out your child has a predisposition for breast cancer, a disease without a definitive cure, will cause you to feed them differently, make them exercise more, reduce stress, abstain from smoking or anything that may bring about epigenetic change to reduce their risks. A predisposition may just be a predisposition, but as a parent you are doing everything in your power to give your child the healthiest fighting chance at life. On the other hand, social and psychological issues need to be addressed. There are certain cons about being "foretold" the future. The parent will watch the child grow up now realizing they have a genetic susceptibility for certain diseases and they may overreact to small things. Maybe the child's experiencing growing pains of adolescence and the parent flips out thinking that its symptoms of a disease and rushes him or her to the doctor. These unnecessary visits to the doctor and stresses will accumulate and develop a certain psychosis.
    The reason why heel stick tests don't survey for diseases like breast cancer is because it would not pass the Wilson and Jungner's Screening criteria. Several criteria would up hold, such as the importance, detectability, and benefits of early testing. However the criteria of fully understanding breast cancer and balancing costs would not but fulfilled.

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  46. I think it is great that we have the technology to test and screen for all these various diseases and whole genome sequencing is just taking this to the next level. Instead of fighting against the inevitable evolution and many uses of technology as it becomes more assessable, we should embrace it and instead familiarize ourselves with it. It is therefore ethical because the genome sequencing doesn't do any harm to the child, but only potential good. The born child will have these predispositions whether or not they are detected so it is a good idea for the parents to be aware of them at an early stage so that they can take the appropriate long or short term action. I would not see my child differently if I found they had a genetic predisposition because that is something that I have no control over since I can't change what genes/traits/diseases I pass on to my child. I would be happy to learn about what my child may have a possibility of developing even if there is no known treatment because it would make me aware of actively seeking to improve my child's quality of life by giving him/her everything possible to be healthy and prevent the onset of disease.

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  47. I do believe that it is ethical to screen newborns for all genes even if there is no cure or treatment for it. I think that doing this will allow geneticists to identify abnormalities in genes and discover conditions that we didn't know existed before. I do not believe that we should test for genes within the womb because I do believe that this will cause parents to chose the option of having their baby or not. Currently Amniocentesis exists for pregnant women to find out if their baby has a condition such as Downs syndrome and this already affects some parents' decisions about holding their baby to term or terminating the pregnancy. If we decide to do whole genome screening on feti (multiple fetus) then parents would be terminating their babies because they may have asthma, a chance of Alzheimer's or even if they have a physical abnormality that doesn't affect their quality of life at all such as heterochromia.

    I don't believe my opinion of my baby would change in response to their genetic testing. However, I do believe that I would raise them in a manner that would be beneficial to them. For example if I know that my child would have asthma, then I would take care to eliminate things at home that may trigger that. Essentially, I would be proactive with their care. I wouldn't want to know their entire genetic makeup because this would be too much of a burden for me to handle for my child. However, I believe that the results should be kept on file and that the doctors should notify me and my child when any disease that they may have might have a chance of developing. For example, if my child was predisposed to having breast cancer, then I believe that when they are an adult and they are around the age that breast cancer usually develops, then we would begin screening for the disease.

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  48. I don’t think it is ethical to newborns to undergo whole genome sequencing at birth. As the NPR podcast stated, this could lead to vulnerable child syndrome. It may also change how a parent raises the child, especially if the parent knows that their child carries the gene for cancer. All of this fear could be so unnecessary, especially if the child never developed the disease. I think that the family should just live their life how they would normally without worrying about what genes the child carries. If I had a child and I knew he or she was predisposed to an incurable disease, my opinions wouldn’t change of them, however, I think how I would raise them would change. I would be very cautious to not expose them to things that could further increase their chance to develop this incurable disease, and I think that would interfere with their entire childhood.


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  49. We should watch the movie GATTACA in class, because it exemplifies the worries mentioned in this article. With entire genome sequencing, there is the fear that eugenics will shape our society and that parents will pick their children based on their DNA. Although they may seem outlandish, it could be something that we see in our future. But at the same time, I do not think it is that ridiculous to use genetic modification to conceive a child with the best traits. May be it is natural to want to do everything that is possible to have the healthiest, best looking, (insert positive traits here) child. From an evolutionary perspective we try to mate with good health looking people because they will provide use with healthy children and support to raise them. And from psychological studies, people try to go for the best options that are available to them. The phrase, "she's out of my league" goes to show that people quantify certain qualities and try to go for them. Maybe genetic modification could be a good thing for people who have "unfavorable" genes that cannot mate with "favorable" genetic partners to conceive more favorable children. If cheap genetic modification is made available to all, it could completely reverse the "she's out of my league" phenomenon for future generations.

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  50. Whole Genome Sequencing is something that on the outside sounds like an amazing and huge accomplishment in the sciences, and don’t get me wrong it is. However when we look close into it we see that maybe it may cause more fear and anxiety that isn’t needed. The birth of a child is always a lot of stress on the parents and I feel that 30 diagnoses from the heel-prick test is already a lot for them to take in. If they were given thousands of diagnoses to comprehend I think that would be too much and to exhausting to take in. There are too many questions and concerns to figure out when given all of that information. As in the article, Rowan and her husband had a million questions running through their heads when they realized what the whole genome sequencing entails. They asked, "[Do] we kind of keep that to ourselves? Or would it be better to just only get the information we really need and then genuinely not know so that we don't have to walk down that road?” When you first have a child you want to do what is best for them and keep them as healthy as possible however these diagnoses may be too much to handle at birth. If the parents feel that genomic sequencing is something that they would want for their child then they should be given the choice I just do not think it should be mandatory. Perhaps they can get the sequencing down the line if at birth it is something they do not want to deal with right away. Finding out that my baby is predisposed to a certain disease would make me feel that I need to set up their lives so that maybe I could prevent it from happening. I would feel the need to protect them as much as possible and sometimes it may not be enough. I feel as though sometimes it is better off to not know.

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  51. I think this is a very grey area. Yes, I think that it is the duty of a doctor to do all they can to help prevent disease or prepare their patients as much as possible if they already have or are predisposed to a certain disease or diseases. If they dont do this they are not doing their job and that is unethical on their part. However, by informing parents about a certain disposition their child might have, although it warns them of it, it does not stop the disease from coming and that can leave the parents in a very bad state of mind with the child. They begin to spend more and more time worrying about what is to come as opposed to what they have. Due to the mental strain it would have on the families I would say that it is more unethical to tell parents about certain diseases, especially those that have no cure, than to just not say anything. If I was in this situation, I could not imagine my feelings for my child changing with information like this. I would just make every moment spent with them while they are strong and health more worth while. If the disease they could get will come in the future, we will cross that bridge when we come to it.

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  52. The fact that we have genome sequencing for newborns available to us is undoubtedly an exceptional accomplishment in the field of biotechnology. However, like with all medical procedures, particularly one as contentious as whole genome sequencing, I think there should be restrictions and strict regulations. I think it is not ethical to screen newborns for incurable diseases. Personally, in this context, I don’t understand the rationale behind disclosing information about a health problem that ultimately has no answer. As I see it, this type of information will have more detrimental effects than beneficial outcomes for the parties involved. For example, the parents may be given information that causes them to live in perpetual fear of their child’s life. In turn, the child may not have the opportunity to live his or her life to the fullest.

    I think one of the biggest problems is that parents don’t fully understand the magnitude of the test before opting to go through with it. As one of the parents in the NPR interview pointed out, they hadn’t really considered all the implications of the test and when they received the information, they were not sure about what to do with it (health literacy barriers). If I were to have a child predisposed to an incurable disease, my opinion of them probably would not change. Even if the disease were terminal, I believe every child deserves to live the fullest, happiest life that they can, learning to cope with their limitations and overcome their challenges.

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  53. Despite the many advantages of whole genome sequencing, I do not think that it is ethical. Sequencing a newborns genome will not prevent the onset of the disease, it will only inform the parents and medical practitioners so they can be better prepared when the time comes. But it will cause a lot of tension and stress because the parents will be spend more time worrying about when the disease will appear instead of enjoying the time they have while their newborn is free of any diseases. If I were given the option to get the whole genome sequence of my child I would not take that opportunity. However, if i did and my child had a predisposition for a certain disease my opinion of my child would not change at all. I would take the necessary steps to prepare for the onset of the disease and I would try to not let the idea of the disease consume my thoughts, taking away from the joyous gift of a newborn away from me and my family.

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  54. Although genome sequencing offers a great number of benefits to newborn screening, I believe genome sequencing would ultimately be more detrimental than beneficial. Some parents who are presented with knowledge that their baby carries genes for an untreatable disease may not know how to handle the information, causing a great deal of stress on the family. Genome sequencing of the newborn will also reveal genetic information of the parents, denying them of their right not to know. Genome sequencing also has the potential to strain the relationship between the parents, as one parent may blame the other parent for not knowing their genetic information prior to planning for a baby. Due to all of the possible negative implications, I do not think it is ethical to include genome sequencing in newborn screening tests. In my opinion, the cons of genome sequencing outweigh the benefits, especially when it comes to testing for diseases that do not have a known cure. If i were to have a baby, and became knowledgeable of my child's untreatable disease, my opinion of them would not change. I try to not imagine a world where an individuals genetic information and susceptibility to a certain disease dictates out they are treated.Whether my child was predisposed to a certain disease or not, I would still try to provide a healthy and nurturing environment.

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  55. Scientific medical advancements continue to grant us the knowledge and information we need to advocate for better, healthier lives. Because of these advancements, human health and life expectancy has grown drastically over the last few decades. Not only are we becoming more adept at treating existing disease, we are currently even more capable at detecting and potentially treating diseases that we may be predisposed to. Health care providers have a duty to do the best they can in preserving patients health, which includes informing them about diseases they are at risk for and what they can do to prevent it or treat it so that their patients can resume living healthy lives.

    As the technology of while genuine sequencing becomes more and more affordable, I think it will be extremely beneficial in the long run for babies to be tested for genetic predispositions. Doctors and generic counselors could then be able to work with parents accordingly to plan and prepare for their childs well being. However, I think that doctors and genetic counselors should work closely with parents to gage how to release the information (e.g. consent forms detailing risks and benefits of releasing genetic information). In these way, parents can choose for themselves whether or not they would want to receive this information and if so, how much information.

    I don't think I would change my opinion of my baby if I knew he or she was predisposed to a genetic condition. I think that I would experience feelings of anxiety or sadness but it is only natural to worry about something that you care about. However, because I understand that genres are not definite, and that mutstions and variants are not definite, and that they do exist, I think I would just have to accept that such variations and mutations do exist as a part of human life.

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  56. I agree with the statement made by the sociologist in this study that genome sequencing for newborns sounds great, theoretically. The idea of knowing that your child may have an increased likelihood of developing certain conditions and that you can then structure their health care or diet to maximize their health sounds like a great concept. However, it is clear that so much more needs to be taken into account. I think the ethics of it really depends on what conditions are being screened for, particularly when the conditions or diseases do not have a known cure or treatment. In those cases, I think it puts a lot of unnecessary stress and anxiety on parents, who then have to decide if, when, and how they will share this information with their child. Furthermore, it is important to remember that the newborns never gave consent to be tested. I would not choose to have my newborn undergo full genome sequencing, and I feel that knowing that my child is predisposed to an incurable disease would not alter my opinion of them.

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  57. This article continues to highlight some of the important problems in medicine and that is whether or not things are ethical. In class we discussed the importance of consent and personal choice. In this case, choice plays a significant role in genome sequencing. Parents make the choice on whether or not they want their children tested and therefore it is ethical in their standards to do so. As stated in the questions Whole Genome Sequencing in newborns is likely something that will become common place in hospitals. Therefore I do think it is ethical to screen newborns for all genes.Although it might cause parents to be anxious about the health of their baby I would feel they would be prepared for the lifestyle that may lay ahead them. They could better prepare themselves financially, emotionally and personally and that ultimately will provide a safer environment for their children. However I do believe parents don't have to tell their children if the sequencing reveals that a child has genes that may make them prone to diseases that may not show up for decades. This will cause an undue burden for the child and parents and it is important that their child has a normal childhood without constantly being in fear. With that being said, I don't think I would change my opinion of my baby if I knew they were predisposed to any conditions or disease. If anything I could be a better parent by being prepared for any situation and discomfort we may face as a family.

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  58. Whole genome sequencing will allow parents to obtain information about their children that could be potentially beneficial, but only in certain contexts. It is difficult to say whether a child should be tested for ALL diseases, as this may lead to more harm than good for both the child’s family and the child. I believe that it is ethical to test children for genes that may reveal predispositions for certain diseases if the child has a family history of a certain disease, and there is a sound, logical reason to test the child. If the doctors and family agree that the test will strongly benefit the child’s current and future health and wellbeing (through implementing certain prevention efforts associated with a given disease), and there are minimal ethical and psychological risks for finding out certain information about the child, then one could argue that the test should be done. Whole genome sequencing could uphold one of the four principles of medical ethics, called beneficence, or doing well for the patient.

    However, whole genome sequencing has drawbacks, which are mentioned in the article. Basically, it threatens to allow people to enhance genetic traits that are already considered normal. This is especially true if testing genomes of fetuses becomes commonplace, as some parents may decide to not have a child if they do not have certain traits that they desire for their offspring, such as high athletic ability or brown hair. Selecting genes unassociated with disease could potentially be unethical, as it could promote societal values consistent with those of eugenics, which would be horribly problematic.

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  59. I think that this argument is a very difficult one. As parents, people want to know what diseases their children could possibly develop. However, as the child/future adult people usually make their own choices about whether or not they want to find out if they are predisposed to a genetic disease. If I had a child who I knew was predisposed to an incurable genetic disease, I would not love them any less. I would do everything possible to make sure they have the best life possible and get them whatever treatment they can. Their diagnosis would not affect my love for them.

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  60. I think that some newborn screenings should be mandatory, but not genome sequencing. The parents should have the option to have their newborn’s genome sequenced. If the sequencing is mandatory, I believe it can do more harm than good, especially if the parents are against the idea of sequencing in the first place. However, some scenarios would be more appropriate, say the child has a good chance of inheriting a condition from their parent(s). In this instance, genome screening would be a good option, especially if early detection of a condition can prevent the condition from worsening. Nevertheless, many factors need to be taken into consideration, such as autonomy, privacy, and informed consent.

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  61. Genome sequencing can definitely be both beneficial and detrimental. Although I do believe it is ethical to screen newborns for all diseases including incurable diseases like breast cancer, I can also see how it may affect the family negatively depending on the results. If my child was predisposed to an incurable genetic disease, my opinion would not change. I would still love them. However, I think I would side with the whole genome sequencing because as technology advances, there will be new ways to cure these incurable diseases. I believe there will always be a cure eventually, even if it will take years.

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  62. If I were a parent with a child who had an incurable disease, I would want to know. It is my responsibility to increase their quality of life as much as possible. Therefore, I would want to get a jump on knowing what measures I can take to prevent or improve anything I can. For the population, I feel it's ethical to screen newborns for genes that predispose them to things that parents can reasonably manage. It doesn't have to be something curable, but something that a parent can at least do something about.

    Yet, I'm hard pressed to say it's unethical to withhold information that they can't do anything about. While some may think it's cruel to be burdened with circumstances you cannot change, I think it's cruel to let people fantastically think that things will always be alright. I feel it's kinder to let a parent know ahead of time that their child may have a short or compromised life so that they can readily accept it and make the most of it rather than have them blindsided with things being torn away from them in the moment. I don't know why people think it's so healthy to choose denial over confrontation and unpreparedness over readiness.

    I do appreciate the warning of abusive eugenics, that is a significant sociological takeaway. I recall a genetics video that my 8th grade science teacher showed us in 2005, not long after the completion of the human genome project. There was a man interviewed claiming that one day you'll be able to just select every quality about your child. Even my 12-13 year old self knew that this was a very long way off, if possible. But it seems more plausible as the years go by.

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  63. Knowing that my child is predisposed to incurable disease would just be painful and heartbreaking. I would be consumed by guilt and worry and consequently, be overprotective of my child. I would love and cherish my child nonetheless, but I would be living with a constant fear that my child would not get an opportunity to live a happy life.

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  64. I think that knowledge is power. Finding out everything as soon as possible is the best option in my opinion. If it's cheap and fast, I support whole genome sequencing for newborns. Knowing about the predisposition for an incurable disease does not stop it from potentially happening or not happening. Also, genes for something like breast cancer aren't definitive.

    There may be things that people can do to avoid turning certain genes on that we discover in the future too. Your genome is a blueprint and things don't always go according to plan. But I think it's best to be ready for what may be ahead. Again, if this can become a common-place thing that's cheap and easy, I would definitely want this for my children!

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  65. I think it is unethical to screeen newborns for diseases that do not have a cure. I don't mean diseases like cancer which have a good chance of being reversed but diseases that are chronic and cannot be cured like Huntingtons or MS. There is no difference in knowing that you're going to have this disease if you can't cure it besides maybe living a fuller life.I think it's important to screen children for immediate life threatening diseases because you can save their life.

    My opinion would not change about my child having an incurable disease - i would love he/she all the same. I would just be very dissapointed that I had to find out much sooner than I wanted to because I'd be so worried about checking for signs and symptoms of said disease. It would just be too much stress and cost a lot of money. It's not the same as being an adult woman and being screened for breast cancer where you can take immediate action because you're and adult woman, with a baby you have to think about what they might want in the future and that's not a decision that parents should make. But if tests are cheap and available and relatively not invasive, I'd have my child tested for immediate life threats, not all genetic disorders.

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  66. Screening newborns for all genes allows scientists to learn more about a variety of diseases. The benefits of such a practice are great. However, the ethical issues regarding this matter are difficult to assess. It is hard to determine the effect these screenings will have on babies when they grow up. These children’s rights are in the hands of their parents at birth, but the children had no choice in the matter at that point in time. While the information collected will contribute greatly to the scientific community, it will be at the expense of the children’s individual feelings and right. Therefore, how ethical these screenings are will depend on the parents. If parents are willing to take the information and act positively on it, then it is ethical to use whole genome sequencing. However, if parents are not willing to act positively on the results, then it is unethical. Ultimately, it is the parents that will have to deal with the information these screenings provide. The way these parents act will determine how the children are affected.

    When I have children, I will not change my opinion based on my babies’ genes. As I have mentioned many times before, I do not judge people based on their biological predispositions. Especially since they are my children, I would not look at them in a different light. In fact, I would much prefer to know about these genes so that I can acknowledge them and learn how to deal with the implications they bring.

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  67. I'm not a religious person but I do believe that things happen in life for a reason. Knowing if my child is predisposed to a disease would not change my opinion about my child, but would only make me worried and overprotective. It's just a dark cloud. The heel stick is reasonable because it tests for major diseases that could cause death to a newborn, and knowing this would reverse the disease and save the child's life. As genome sequencing continues to develop, so is modern medicine. As people become sick, there is treatment, and as years go by, treatment becomes more effective and efficient.

    Ethically, there are many issues surrounding newborn genetic sequencing because the child's autonomy is not being respected. Granted that the child does not have much say or opinions, it does not mean that later on in life they will not either. Parents are supposed to choose what is best for the child, but the child is still an individual being. The child could resent the parents later on in life for choosing to sequence his or her genome. However, if a family has strong genetic disposition for a disease, and diagnosis would be life saving, then sequencing a child's genome could be justified.

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  68. I don’t believe it is ethical to do whole genome sequencing on newborns. I completely agree with life saving screenings but I don’t believe testing for predispositions to chronic conditions or late onset diseases. I believe whole genome sequencing is problematic because in multiple instances it can cause psychological distress especially if there is no cure for a disease. It’s also problematic because it puts the burden of explaining the results to the children on the parents and there’s no guarantee they even understand it themselves. If I decided to have a child I doubt a predisposition to an incurable disease would change my opinion of them.

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  69. While whole genome sequencing might allow physicians and parents to become aware of treatable diseases before the child is born and ultimately save the child's life, gathering information regarding genetic predispositions of a unborn child raises a lot of ethical questions. In our society, every individual is given the autonomous right to decide whether to undergo genetic testing or not. Likewise, I believe the best thing to do is to view a child, unborn or not, in the same way, and extend this right to them as well. As individuals, women have the autonomous right to decide what to do with their own bodies, including when they become pregnant, but I thought it is wrong for parents to have a sense of entitlement when it comes to obtaining genetic and physical characteristics of their child, especially before they are born.

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