When it comes to ethics, people start thinking a little crazy. Add children to the mix and something is going to hit the fan. In the case of newborn screening, Nature Online published an article titled “There will be blood” that focuses on the dismissal of ethics when screening newborns by not obtaining informed consent from the parents. In another article, “Newborn screening program helps save twins' lives,” the article focuses on how newborn screening saved a set of twins’ lives, though informed consent might not have been obtained. While consent of intent would be nice to appease ruffled feathers, there shouldn’t be a question of ethics in newborn screening. New born screening saves children’s lives every year by catching diseases and disorders that could be fatal. Articles like “There will be blood,” stir up moral objection and undercut the important practice of newborn screening that articles like “Newborn screening program helps save twins' lives” emphasizes.
In “There will be blood,” the thesis reads as follows:
This is newborn screening in the United States, which identifies problematic conditions in some 3,400 infants each year. In many ways, it is public health care at its best. In others, it demonstrates the sometimes fraught relationship between the medical and research communities and the public.
Nature Online pinpoints this “fraught” relationship by focusing on what’s done afterward to the blood samples obtained from pricking newborns’ heels:
The problem is not only that many parents miss the heel-prick test at the time, but also that they can be unaware of it altogether. That might be acceptable if the blood sample taken from their child was destroyed after screening, but it is not. In fact, some blood is retained (sometimes indefinitely), stripped of identifying information and used for quality assurance and unrelated biomedical research. Usually this is done without the parents giving their explicit informed consent.
Though the article at the end ends with a hope for reform to educate parents and to include informed consent, this article demeans the purpose of newborn screening and will probably warn parents off from the live saving practice. A peaceful transition to educate parents and to obtain consent will be thrown at the window if articles like these still continue to be published and most likely, the issue will end up in courts.
But for the people who can see pass the trap of ethics, they see newborn screening as a good thing. In the article “Newborn screening program helps save twins' lives (which also functions as the thesis),” the article focuses on a set of twins, Charlotte and Sophia Gonzales, who would have died their first week if were not for newborn screening. The twins screening revealed a rare metabolic disorder, methylmalonic academia, which is fatal when not caught early. The twins’ parents, Megan and Ricky Gonzales, do not recall signing a consent form, but do not feel any injustices or violations of ethics occurred. All they remember is that the screening saved their children’s lives.
The article also comments on the practice of keeping the blood spots after screening. ‘"What most people don't know and probably don't appreciate is that beyond actually screening your child to learn whether they have any inherited conditions that may be treated, their blood spot is kept in a bio bank indefinitely in California," said Jeremy Gru-ber, executive director of the Council for Responsible Genetics.’ Though he also comments on parents being more informed on the practice, he makes it clear the bank is not operated for malicious intent. Packard Children's Dr. Gregory Enns, the twin’s biochemical geneticist, also commented on the bank and is quoted saying, “The samples can provide important public health information but can't be accessed without consent.”
Although informed consent would be ideal, the article in Nature Online counteracts the movement of reform; it scares parents off screening. Newborn screening is not something that is to be feared, though. It is done to save children’s lives. If articles like “There will be blood” continue to penetrate the news, newborn screening may be stigmatized and parents will refuse the practice. Fortunately for Sophia and Charlotte, they were born before the controversy started getting heated, and are alive because of newborn screening. They same can’t be said for future newborns who might die due to negative views being projected on the live saving procedure.
Works Cited
Colliver, Victoria. “Newborn screening program helps save twins' lives.” San Francisco Chronicle. 20 Jan. 2012. Web. 29. Jan. 2012.
"There will be blood." Nature Online (2011). 14 July 2011. Web. 29 Jan. 2011.
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