There is an ongoing debate about the rights of parents in the process of newborn screening. Newborn screening tests for genetic disorders days after birth, often times without parents’ consent or even knowledge. The current system of newborn screening is completely unethical, and reforms of newborn screening procedures are desperately needed in order to ensure that the rights of parents and infants are properly protected.
Newborn screening identifies genetic diseases by pricking infants’ feet and placing blood samples on filter paper. This sample is then tested for a number of diseases that can be managed when detected early. This seems like a reasonable procedure. After all, who wouldn't want to protect their child from preventable suffering and disease? What happens to the sample after it is tested is the most questionable portion of the testing: the sample can be sent to research facilities and kept indefinitely for any kind of research.
The American College of Medical Genetics (ACMG) has affirmed the effectiveness of newborn screening in diagnosing disorders, stating that “it is estimated that thousands of babies' lives have been saved or have been spared from serious disease as a result of the expanded NBS” (esceiencenews.com). Obviously, eliminating newborn screening altogether in order to protect the rights of patients is not the proper solution. The ACMG did not say, however, anything about reforming current practices or regulations of newborn screening. This gives the strong impression that they see no need for reform nor do they intend to make any changes about their policies. While Nature’s “There Will Be Blood” does not dispute the usefulness of newborn screening, it does confront typical practices for administering the test and handling the samples.
“There Will Be Blood” highlights the fact that even when parents are aware of the fact that their child is being screened, which is not always the case, they usually have no knowledge about the possibility of their infant’s DNA being stored indefinitely for research. If parents are given the choice to have their child’s blood spots destroyed after being tested for disorders, they are often asked to make the decision on the spot and with little information about the process. Much of this ambiguity in the screening process comes from the fact that states get to conduct the process, resulting in a lack of uniformity and regulation.
The ACMG released a statement from their 2009 summit about newborn screening, affirming that “newborn screening blood spots are stored with rigorous control and respect for privacy and confidentiality to protect the public” (esciencenews.com). However, whether or not a patient’s name is linked to their sample is not the issue. The fact that the samples are kept at all without consent is the real problem.
In 2006, the ACMG “recommended that all newborns in the United States be uniformly screened for 29 conditions” (esciencenews.com). While this recognizes the need for uniformity among screening processes by requiring that all newborns be screened, it is hardly a solution because it proposes no regulation of hospitals. More accountability among the medical and research fields is necessary in order to protect the rights of patients. Three things must be done in order to bring the screening process where it needs to be: 1) educate parents about the screening process in advance, and 2) give parents a choice of what happens with their child’s blood spots 3) hold researchers and hospitals accountable for the samples of newborns’ DNA.
“There Will Be Blood” theorized that these reforms have not taken place yet because researchers are afraid of how it will affect their sample size. They fear many parents will not release their child’s blood spots if they are more informed about the screening process and given the choice to opt out. However, “There Will Be Blood” argues that parents would most likely consent if given the chance to make an informed choice. “To be unclear about how newborn blood is collected and used is the fastest route to turn the public against sampling of newborns for any purpose — including screening programs” (Nature). These reforms would give parents peace of mind about their child’s DNA being used for research, but also allow the medical community more freedom to research because they would no longer be working in secret. We cannot let the misuse of newborns’ DNA be added to the long list of injustices committed against the American people by our broken healthcare system. Without reforms, the current newborn screening process is completely unethical.
Works Cited
"There Will Be Blood." Nature Online. 475.139 (2011): n. page. Web. 3 Feb. 2012.
"American College of Medical Genetics Affirms Importance of Newborn Screening Dried Blood
Spots." e! Science News. N.p., 11 May 2011.
The American College of Medical Genetics (ACMG) has affirmed the effectiveness of newborn screening in diagnosing disorders, stating that “it is estimated that thousands of babies' lives have been saved or have been spared from serious disease as a result of the expanded NBS” (esceiencenews.com). Obviously, eliminating newborn screening altogether in order to protect the rights of patients is not the proper solution. The ACMG did not say, however, anything about reforming current practices or regulations of newborn screening. This gives the strong impression that they see no need for reform nor do they intend to make any changes about their policies. While Nature’s “There Will Be Blood” does not dispute the usefulness of newborn screening, it does confront typical practices for administering the test and handling the samples.
“There Will Be Blood” highlights the fact that even when parents are aware of the fact that their child is being screened, which is not always the case, they usually have no knowledge about the possibility of their infant’s DNA being stored indefinitely for research. If parents are given the choice to have their child’s blood spots destroyed after being tested for disorders, they are often asked to make the decision on the spot and with little information about the process. Much of this ambiguity in the screening process comes from the fact that states get to conduct the process, resulting in a lack of uniformity and regulation.
The ACMG released a statement from their 2009 summit about newborn screening, affirming that “newborn screening blood spots are stored with rigorous control and respect for privacy and confidentiality to protect the public” (esciencenews.com). However, whether or not a patient’s name is linked to their sample is not the issue. The fact that the samples are kept at all without consent is the real problem.
In 2006, the ACMG “recommended that all newborns in the United States be uniformly screened for 29 conditions” (esciencenews.com). While this recognizes the need for uniformity among screening processes by requiring that all newborns be screened, it is hardly a solution because it proposes no regulation of hospitals. More accountability among the medical and research fields is necessary in order to protect the rights of patients. Three things must be done in order to bring the screening process where it needs to be: 1) educate parents about the screening process in advance, and 2) give parents a choice of what happens with their child’s blood spots 3) hold researchers and hospitals accountable for the samples of newborns’ DNA.
“There Will Be Blood” theorized that these reforms have not taken place yet because researchers are afraid of how it will affect their sample size. They fear many parents will not release their child’s blood spots if they are more informed about the screening process and given the choice to opt out. However, “There Will Be Blood” argues that parents would most likely consent if given the chance to make an informed choice. “To be unclear about how newborn blood is collected and used is the fastest route to turn the public against sampling of newborns for any purpose — including screening programs” (Nature). These reforms would give parents peace of mind about their child’s DNA being used for research, but also allow the medical community more freedom to research because they would no longer be working in secret. We cannot let the misuse of newborns’ DNA be added to the long list of injustices committed against the American people by our broken healthcare system. Without reforms, the current newborn screening process is completely unethical.
Works Cited
"There Will Be Blood." Nature Online. 475.139 (2011): n. page. Web. 3 Feb. 2012.
"American College of Medical Genetics Affirms Importance of Newborn Screening Dried Blood
Spots." e! Science News. N.p., 11 May 2011.
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