Many parents reluctant to test newborn DNA for disease risk

NPR |
October 2016
Radio

A family that had participated in the BabySeq project shares their experiences about getting their baby’s full genome test results back that showed a mutation in the elastin proteins (elastin helps heart muscles bend and stretch). The father of the baby states “.. I think the biggest regret would have been had something happened down … Continued

Infant DNA sequencing finds genetic disorders that standard testing misses

Vancouver Sun |
October 2016
Press

Highlighting the story of a family who participated in the BabySeq study that detected their newborn infants partial biotinidase deficiency. Shawn Fayer, the project manager of BabySeq and a licensed genetic counselor stated, ” Symptoms would likely have appeared if the child had become sick from something else, which makes it very difficult to diagnose. … Continued

Q&A: Sequencing Newborns

The Scientist |
October 2016
Press

Dr. Robert Green sits down to discuss the results of a participating family in the BabySeq project where a BRCA2 mutation was found in a baby boy and how the situation was approached to tell the family since this directly affected either one or both of the parents.

These parents don’t want to know what’s in their baby’s DNA

Buzzfeed |
October 2016
Press

The idea of newborn sequencing may have been initially inviting to parents who were expecting healthy children, but after learning of all the adverse effects that lead after, many decided to not follow through as research participants.

Will babies be better off if we know their genes?

Washington Post |
October 2016
Press

“An ongoing clinical trial at Brigham and Women’s Hospital and Boston Children’s Hospital, called BabySeq, is trying to untangle some basic questions about the benefits and harms of gene sequencing. Does it improve health? Does it lead to lots of excessive medical testing? Does it cause harm?”

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