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?
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.
ReplyDeleteA 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.
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.
ReplyDeleteHowever, 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.
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.
ReplyDeleteMost 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".
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.
ReplyDeleteOn 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.
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.
ReplyDeleteKnowing 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.
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.
ReplyDeleteI 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.
ReplyDeleteI 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.
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.
ReplyDeleteI 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.
ReplyDeleteI 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.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI 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).
ReplyDeleteFor 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.
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.
ReplyDeleteI 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.
ReplyDeleteAlso, 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.
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.
ReplyDeleteOn 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.
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.
ReplyDeleteKnowing 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.
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.
ReplyDeleteIf 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.
Alex,
DeleteI 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.
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.
ReplyDeleteI 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.
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.
ReplyDeleteMy 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.
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.
ReplyDeleteIf 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.
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.
ReplyDeleteI 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.
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.
ReplyDeletePersonally, 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.
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?
ReplyDeleteIt 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.
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.
ReplyDeleteI 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.
ReplyDelete
ReplyDeleteI 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.
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.
ReplyDeleteThe 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.
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.
ReplyDelete
ReplyDeleteI 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.
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.
ReplyDeleteThis 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.
ReplyDeleteWhole 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.
ReplyDeleteHowever, 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.
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.
ReplyDeleteI 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.
ReplyDeleteGenome 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.
ReplyDeleteIf 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.
ReplyDeleteYet, 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.
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.
ReplyDeleteThere 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!
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.
ReplyDeleteWhen 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.
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.
ReplyDeleteEthically, 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.
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.
ReplyDeleteWhile 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.
ReplyDelete