With the new method, a computer program searches for genes based on the baby’s symptoms. And because it focuses only on genes that cause diseases in newborns, it avoids an ethical problem: findings that are unrelated to the problem at hand. In sequencing and analyzing the entire DNA, researchers may discover, for example, aberrations leading to conditions that occur only in adults. Do parents really want to know that their sick baby has a gene that increases the risk of Alzheimer’s disease?
This new technique solves a number of ethical questions that usually arise with DNA testing. Because it is used only on children already displaying symptoms of a condition, it is about the avoidance of “heroic measures” resulting in excess suffering for children with fatal conditions and for their families as they struggle to find out what is wrong with their child.
The major concern that this study leaves unresolved is the class division that biotech innovations always come with - it is only wealthy families who can afford this measure of kindness and dignity, can afford some mitigation of their suffering. Lower-class families with sick children are expected to suffer and seek for a diagnosis until the very end.
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