When you have just given birth to a child, the nurse will take the child a little blood and hand it to the lab for a series of tests. But in most cases you will hardly get any test results, because your child is usually lucky enough not to have rare diseases such as cystic fibrosis, sickle cell anemia. And as a parent, you may not even remember the newborn screening.
Newborn screening is required in most states in the United States unless parents refuse or cannot be tested for religious or other factors. Parents usually receive screening for newborns because screening is only for a small number of major illnesses, and once diagnosed early, it is likely to eliminate the disease and even save the child's life. But now scientists have developed a genome-wide sequencing approach. What if the government starts using these methods to detect the health of newborns? How will this work? What information should parents get? What information should not be obtained?
In order to solve these problems, the US NIH funded a team of researchers and doctors from multiple institutions (NSIGHT), which teamed up with newborn parents to conduct genetic sequencing of newborns, trying to find information to improve the use of this new technology. Guidelines to determine how to apply this technique more effectively to newborn screening or care, and their research was recently published in Pediatrics.
“How to determine what information parents should know is important. They should know if their children are healthy, but they should not let them know too much to prevent them from interfering with their normal growth and development at the genetic level.†Associate Professor, University of North Carolina School of Medicine Jonathan Berg said he is the co-author of the study. “This is one of the most important bioethical issues of our time: at what level should we protect the rights of children to make their own decisions? Some people think that new technologies have made this concept obsolete, and some people think this will interfere with children’s autonomy. Right, even parents may hurt children."
A very striking example is Huntington's disease. Some children carry genetic defects that may cause illness, but until adult children do not have symptoms, should parents know this? What about neurodegenerative diseases that develop in childhood? If early intervention may help, but what if the child may not become ill in adulthood?
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