Newborn Screenings?

Group 42

Genome sequencing is controversial in biomedical engineering. Newborn dried blood spot screening (NBS) aims to map the genetic code of newborns by collecting drops of blood. Therefore, genetic disorders can be screened out. By 1975, 43 states in US had legislated mandatory NBS of phenylketonuria disorder (PKU) for all infants. The problem comes out, there has been an expanding number of disorder to be mandatorily screened. That is, it comes to a dilemma, should NBS service be made mandatory to public?

Newborn screening: Do we really want to know the result? (Mandatory)

The purpose of whole genome diagnosis is to screen all possible current and future health hazards, including serious genetic, metabolic, hematologic, infectious or auditory disorders, of the newborns. In order to meet the purpose, NBS should be made mandatory so that the parents can know about the health situation of the newborn in depth.

With compulsory NBS, parents can be both mentally and technically prepared for how to take care their baby and can find early treatment for their children. For example, if the baby has high risk of obesity, the parents can train their children to develop a healthier lifestyle or seeking help from nutritionist to prevent obesity problem.

Moreover, the blood samples of the newborn also imply the privacy and identity of family members. Family history will be reflected by screening the baby’s blood sample. If the newborn has disorder, it may probably inherit from their parents. This may help notice the health background of the parents so that it can raise their awareness on their health situations.

In addition, current low birthrates and the ageing population problems are no longer a local problem but a global issue(Kelly, Makarem and Wasserstein, 2018). This implies the labour force is decreasing globally. Gene screening of newborns can provide early treatment to the baby who would otherwise have been permanently disabled. This definitely reduce the probability of infant mortality as well as save the productive members of the society.

As the screening target of NBS is the infant, they get no choice in determining whether to map their genes or not. It is their parents who make the choice for them. That is, the infant themselves have the equity and right same as the others to screen out any disorder and prevent the health risk as soon as possible. Making it mandatory can make sure every newborns get the same right to protect themselves.

Last but not least, legislating mandatory NBS means there are larger number of gene mapping result. Scientists can request for the use of dried blood spots under strict review and evaluation. And the requested sample codes will be assigned to a new tracking number. Therefore, the privacy of the infant can be protected. When scientists have better knowing of different disorder sequencing under a legal request of the samples, they get a higher chance of correcting the problem gene. It in turn, saves more human life.

Our evaluations are based on the number of human life that can be saved and the human right of infants. Legislating compulsory NBS can on one hand help most of the newborns with disorder to better prevent and tackle to the problem. On the other hand, infants have the right to know the health through gene sequencing.

Newborn screening: Do we really want to know the result? (Voluntary)

Although NBS has various benefits on diseases testing for infants, retrospective researches of families, etc. It ought not be mandatory to every individual. People ought to defend the public’s right to reject any unwilling gene test in any form.

NBS may create the fear of perverse experiments in eugenics, also associated people’s concern with racial discrimination, social stigmatization and labelling. There may be historically and culturally particular stigma in light of genetic test results. For example, in the US, there are reports on the historical basis of racism against African Americans and misunderstanding of sickle cell screening resulting in mistrust and suspicion in NBS with sickle cell screening described as viewed by some as a potential attempt at racial genocide or to reduce reproduction amongst African Americans (Tarini and Goldenberg, 2012).

NBS can change life planning decisions of an innocent child in unintended modes. Besides false positives results, such as the sickle cell screening, indeterminate results and overdiagnosis are significant factors that must be considered due to the great harm to families from such a mishandling result. Indeterminate results make children and their families suffer from “diagnostic dilemmas”. Like Krabbe disease, the treatment might be as harmful as the diagnosis. What the family could do only is to await the onset of this disease in a fear. In addition, an overdiagnosis usually happens during screening programs and always complicates matters, because screening occurs in an asymptomatic population, clinical features cannot be used to distinguish between a true case of disease and a case of overdiagnosis. Unfortunately, children will be compelled to accept some unadaptable treatments when they have been told that the disease threaten their lives.

Additionally, NBS is implemented by state-run public health programs. Every state therefore has the responsibility and authority to structure and operationalize the program in any ways based on its conditions of finances, techniques, etc., which leads to a large number of unfairness with respect to many aspects of the program. The most visible unfair variation is the differences in the disorders screened. For instance, some children are not able to be screened for certain disorders because of their specific birthplaces.

Parents must worry about children’s health and future and suffer the unnecessary stress and anxiety due to some deficiencies of NBS like what mentioned above. Those depressions, impaired parent-child relationships and broken hearts could be avoided if parents did not receive the mandatory NBS. On the other hand, unnecessary health care services and hospitalizations result in medical resources waste.

Therefore, NBS should be optional for citizens. The mandatory nature of NBS is known as a ‘emotionally taxing’ that ignores the psychological impact of unfavorable screening results. Legislation could be one option, for example, parental permission before participation and compensation for false positives.

34 thoughts on “Newborn Screenings?

  1. This is a complex and interesting article.

    The issue is that by screening the blood of newborns we are able to identify issues that will affect the newborn’s future life.
    The issue is one of destiny or free will – and it doesn’t get any more intense than that.
    Do you want to know how your life will pan out? Or do you want surprises, some of which may be deeply unpleasant, such as developing cancer in early life.

    We know everyone has a different genetic background, but equally we strive to treat everyone the same. So this is a dilemma.

    So, if we go for voluntary, what are the ethical theories that support this?

    If we go for mandatory testing, what are the ethical theories that support it?

  2. It is true that genome sequencing can help the world advance by increasing the knowledge of DNA and genetics. But I do not agree with a mandatory screening. This database would be controlled by each government, and one of the biggest concerns of it is that that information could be sold to the insurance companies, and with that, they could increase your payment since they can evaluate the probability of you getting a severe disease.

  3. This is an interesting topic. But I think the program should be mandatory, more babies can prevent from long term disability and diseases as diseases can be identified on the early development of infants and they can receive suitable treatment earlier, the effects on the newborns will be minimized. If the database is monitored by government, the security of it should be increased to ensure the privacy of each newborns. There is a significant clinical outcome for newborn screening.

  4. It’s quite hard to determine to set it mandatory or not. As said in the article, the babies themselves have their right to screen for any diseases. On the other hand, if the result shows negative and the disease can’t be healed, how should both the parents and babies face and overcome this truth? The result is unpredictable and nobody will know if the screening help or not. Yet, in my opinion, the service made mandatory can definitely increase the chance of life, which is more preferable. If the result is not favorable, i believe the government can set up a system to comfort these group of people and provide any extra help to them.

  5. This is a topic closely related to us, to our offsprings. Newborn screening technology has important impacts on the medical field and even human history. Undoubtedly, we would like to understand our health situation. We always prefer good news to bad news. But, we cannot control it. Luckily, after the screening, the newborn could receive early treatment and can grow up healthily and happily. If the newborn is suffered from rare diseases and cannot be cured nowadays, the life of the newborn will definitely be changed. How can the baby grow up positively?

  6. This is a very informative paper. Newborn is not only related human history but also the future. Whether human can stay for a long time. Newborn stays a kmportant role specially nowadays. A health body is important.

  7. A thought-provoking article!

    NBS is neutral. Whether NBS will bring positive or negative influence really depends on how people use it.

    For the standpoint that NBS might create the fear of perverse experiments in eugenics, if NBS is prohibited in being used in eugenics by the government, the fear probably won’t exist.

  8. This is an interesting and informative articles.
    It is good to find out the disorder of an individual as early as possible. With the help of the newborn dried blood spot screening (NBS), some genetic disorders can be discovered and suitable treatment can be provided to the patients. This would maximise the rate of survival of the newborns.
    However, this article provides a different views on NBS. This question oneself should NBS be widely use and the ethical issue should be concerned. In my point of view, I agree that NBS should be optional for everyone.

  9. This is an informative article!
    In my opinion, new born screening is not necessary as the true meaning of life should not be knowing the future and walking the same way as the predicted one. The screening of DNA involves in conflict as the DNA sequencing only tells us the probability of getting certain disease and it will probably results in the abortion issue.

  10. This is an interesting paper but hard to read to some degree. Personally I don’t mind the DNA test.

    First, I want to say of course results of the newborn screening test may raise wider family and paternity implications beyond the infant screened to the parents and wider family. These issues include misattributed paternity, or a new discovery of parental carrier status. This has increased the number and the complexity of the ethical problems related to newborn screening programs.

    Also I believe that , ethical issues should receive more attention and consideration for a better and more complete understanding of the overall impact of neonatal screening programs. This more extensive and ethically correct approach should allow us to find an optimal equilibrium between the potential benefits and the possible damages deriving from neonatal screening programs.

  11. Very good article. I like this writing. A screening test shows whether there is a high or low risk that our baby has a disorder,our baby can receive treatment to prevent serious health problems in coming life. That’s good.
    However The communication of positive newborn screening results presents another challenge.Many of the disorders screened are rare, and primary care physicians have expressed alack of comfort with explaining them to parents .

  12. In the ethic vision to judge a new technology is necessary. This paper give a problem relate to technology and human right.
    I don’t agree that using technology for newborn screening because the law is not perfect. Development of new tech should go with humanity developing. They have interrelationship. Rapid technological development could leads to the lost of human right. Then technology lost its aim, helping people.
    If there is no relative law to control it, newborn screening is too early to devote in scientific and medical areas.

  13. This is an interesting and informative article. This is very new for me. Before I read this article, I have no idea what Newborn dried blood spot screening is. NBS can help us to prevent disease in the future by having different genes. On the other hand, the baby will suffer from pain if the baby who have disease. This may not be a good way to prevent the disease. The government may need to think another win-win action for the community.

  14. I think it is important for you to begin the study of human biology, including genetics and probability. Maybe you should talk more about this to let people get a better understanding. What are the benefits of NBS? I don’t see examples raised by ethical and legal concerns. How important are these psychosocial effects when testing is performed in the newborn period?

  15. This article is nicely organized. It shows the advantages and disadvantages of NBS but it’s a little bit misleading. NBS the most ambiguous of the principles and may generate confusion: which justice should be followed? Moral? Legal?Religious? Economic? The results of a screening test could be beneficial for the child , but produce damages to other members of the family ; the full exercise of autonomy by the parents could be deleterious for the child. Who should make these and other critical decisions? I think screening of a carrier state in newborn infants, and in young children in general, is ethically unjustified.

  16. Very impressive work I have ever seen! I was studying with Luo at ELTC (English Language Teching Center) one year ago. He is an intellengent and hard-working person with integrity.

    NBS is neutral. Whether NBS will bring positive or negative influence largely depends on how people use it. Personally, I do not mind DNA test and I advocate NBS on infant because it can help to avoid some unwanted situations.

    Indeed, it can cause some ethical issues. As I said before, it largely depends on how people use it.

  17. This topical is very good but the article is kinda opaque. I like the artical anyway and I’d like to do this comment:
    I don’t know if NBS is happening in my country but it’s a good thing anayway.A large problem is the false positives connected to the screening process. Parents in these circumstances are faced with the immediate decision of whether or not to start some treatment needed to save the life of the infant or to prevent irreversible neurologic damage when it might turn out that the treatment itself could be harmful if their infant is not a true positive. My question is what are the moral theories of ethics? What is the importance of the ethical theory? What are some examples?

  18. I feel that we should not make newborn screening mandatory but to allow parents to have to option whether to opt for it.
    Though newborn screening provides a lot of advantages for both the parents and the child as described, the disadvantages seem to be more “permanent” or may have a longer lasting impacts. For example, the diseases that the child might carry can be cured as they grow older. However, in comparison, an impaired parent-child relationship or racism may not be as easy to fix or correct.
    A possible action could be to provide incentives to conduct newborn screening as the screening might help to benefit society and if the parents were to weigh the pros and cons of screening, they could then make their choice.

  19. This can be an advantegeous technology in the field of therapeutic interventions. As the newborn screening can allow the diagnosis and prediction of diseases of the babies, it provides lots of benefits to people in the society, mainly parents and doctors.

    For parents, they can predict the diseases by this advanced technology and give a proper prevention and earlier medical treatment to their babies to prevent the risk of occurrence of the predicted diseases.

    For doctors, newborn screening technology can allow them a continuous development of some appropriate medical treatments and drugs by the use of genetic engineering.

    I believe this technology can satisfy the well-being of human if the government can regulate this approach in a win-win situation such as good protection of security and privacy about the gene of the newborn babies.

  20. I think NBS should be mandatory for newborns. The technology could screen the hidden disorders which would be occur to newborns so that the parents of newborn could know the health situation of their baby and find out the proper treatment to the disorder as soon as possible. Therefore, NBS is a good technology for both parents and newborns. However, it brings another problems if NBS is mandatory, which are the ethics and the increase in operating costs. The NBS will obtain the important health information of the newborns so the privacy should be protected with well regulations and the operators should be trained regarding to the rule of ethics so that the privacy of newborn can be secured. Nevertheless, these would increase the operating costs so the government has to put more resources in developing this system.

  21. This is a very interesting article.

    For the mandatory side, I can see you try to provide as many reasons as possible to support your view. However, some of the ideas are not strong enough to persuade the readers. For example, you have mentioned mandatory screening can increase birth rates (or labour force) because early treatment can be applied to the newborn. I dont agree with this statement as birth rates is closely related to the couple’s willingness to give birth but not the infant mortality. No matter how high the survival rates is, the birth rates depends on the number of parent wish to give birth. So I think this is not a valid argument to support your idea.

  22. This is an informative and interesting article. Although NBS may help in some areas such as medical treatment, it should not be mandatory as people should have their rights to choose. Also, some people may concern about the issue of privacy. Since o

  23. This is an informative and interesting article. Although NBS may help us in some areas such as medical treatment, it should not be mandatory as people should have their rights to choose. And some people may concern about the issue of privacy. Since NBS is quite new to most of us, more promotion is needed.

  24. This article has given us an overview of newborn screenings and whether the result of it should be made mandatory or not.

    It should not be mandatory because people have their to right to choose whether they want to know the result or not. Also, privacy issue is also one of the concerns.

  25. Well done! It is a well-structured essay with clear messages. Both sides of the essay are well-written with clear standpoint and related examples to support your idea. However, this essay is more like an essay talking about the pros and cons of Newborn dried blood spot screening. I would like to know more about the ethical issues that NBS brought and how does it affect the society in this aspect. For example, in terms of human rights, how can NBS ensure the rights of babies as they should have their right to choose for themselves but not by their parents, and maybe how does NBS affect some more the existing belief or common practise that people used to think it is correct in term of moral aspect. These are what I would like to know more about.

  26. What an inspiring article!! I find it very comprehensive to analyse the pros and cons of this technique for the newborn screening.

    I do support it to screen out any mutation of the genes for the newborn before it is too late. It makes good use of the social resources to nurture the future pillars and save the financial crisis for the so-called burdens of our world since the government all around the world need to give out different kinds of allowance to for the unlucky babies for their future carings support and fee

  27. Screening for newborns is a very serious topic, which can reduce neonatal mortality while avoiding certain diseases. However, this involves gene sequencing, which is back to the topic of eugenics. Parents know that the results of the gene sequencing technology will plan the life of the newborn and allow it to grow according to the test results. Is this a limitation on the child’s growth?

  28. One argument for requiring parental consent is that by mandating newborn screening, we are undermining the autonomy of parents and their right to make decisions regarding their children. Parents are considered to have the absolute right to make decisions regarding their children’s health if there is no evidence of neglect or abuse. These choices are reflected through informed consent, which is an essential legal right in the health care system. When it comes to health care decisions, it has been acceptable to override this right when it is assumed that the patient would have consented if they had a better understanding. Some people may think that this argument should not be used for genetic diseases since they entail more than minimal risk and they represent value choices and reflect parents’ beliefs. Although informed consent gives parents their right to autonomy and privacy,I want to argue that the principle of beneficence gives states the right to impose on parental autonomy if there is evidence that the broader public benefit of newborn screening outweighs individual rights. Given the undeniable benefits of newborn screening for high benefit-ratio conditions as described above, I agree with group 42’s position that the principle of beneficence overrides parental individual rights in the screening for these life-threatening but treatable conditions.

  29. This article has a clear structure and there is a detailed analysis of the advantages and disadvantages of NBS.The mandatory NBS so that parents can understand the health of the newborn and do well in advance, but the article also raises the question that the privacy of the parents will be leaked and the rights of the baby are also violated in fact.

    The problem in this article is that no moral framework is used to evaluate this NBS biotechnology, and one or two moral frameworks such as utilitarianism can be used to determine the ethics of this technology.

  30. When the state participates in the review, its problem is mandatory. This should be their choice for parents of newborns. According to the principle of freedom, as long as one’s activities do not affect the interests of others, he will have the freedom to choose. The problem is that the newborn does not have the ability to choose oneself. Then does the country or his parents use this power instead of him/her? In my opinion, this power should be given to the infant’s parents, who are obviously the bearers of the consequences, and the consequences for them are far greater than their impact on the country.

  31. This article has been split into two part to discuss whether the NBS should be madatory. The mandatory nature of newborn screening has been justified based on the individualized child welfare/child benefit model, which supports the addition of tests to mandatory screening panels under the argument that information gathered from newborns is used to directly benefit children. Some countries support mandatory screening on the basis of parens patriae power, which gives them inherent authority to act to promote the welfare of children. If the government is concerned that forgoing screening could result in harm to a child, parens patriae permits the state to override the parents’ autonomy.

  32. This article should have considered the NBS in many fields including:legislation, court decisions, genetics programs, and scholars in the social sciences, humanities, law, medicine, and genetics support discoveries in genetics that now facilitate genetic testing, prenatal diagnosis and selective abortion of fetuses with genetic and other disorders, artificial insemination, and in vitro fertilization. They also need arguments for and against these procedures are reminiscent of debates about the use of the limited tools of the old eugenics to prevent the birth of children who were considered to be physically, mentally, or socially defective.

  33. This topic did give me a lot of thought. In my opinion, NBS is indeed a helpful technology that deserves to be developed and spread. However, NBS should not be mandatory for newborns. Cause, it will involve a lot of critical issues such as human rights and values, I believe that with the development of people’s ideological values, more and more parents will make the best choice for their children.

  34. If you look at embryonic cells as a life of human rights, blood spotting screening is indeed a controversial technique for threatening human rights. But this is indeed an effective method for screening defective genes, and for families or individuals, life with severe malady or disease is not expected. All genetic technologies are double-edged swords. Formulating effective laws and regulations to prevent technology abuse is the best way.

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