What to Know, What to Tell

Studies are gearing up to determine whether whole-genome sequencing should become a routine part of newborn care and are taking on the associated ethical considerations.

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No way is some committee or

No way is some committee or other group or individual going to play "Big Brother" based on some arbitrary decision and not report on the medical and scientific results of testing on me or my child. Period! I've been around science and medicine for most of my life and these fields are not immune from idiotic and misguided activities as any other segment of society.

Inform me completely and my family and I will make these decisions. You have NO RIGHT to do otherwise and I will never relinquish that prerogative voluntarily. Use your heads, people. Any other decision is dangerously close to autocracy. My family won't have it! And neither will many, if not most, other families.

I hear and appreciate the

I hear and appreciate the anger in this post -- we all want to do everything possible to protect our children from harm. But the issue is a little more nuanced. Especially with adult-onset disorders, you have to consider the right of the child to decide, at an appropriate age, whether s/he wants information about their genetic risk. Variable expressivity, reduced penetrance, and other uncertainties make results interpretation even more complex. You can't decide your child's risk tolerance for them.