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Policy and Privacy and …

The launch of the pilot projects funded by the National Institute of Child Health and Human Development to investigate how genome sequencing of newborns affects their care and related ethical, legal, and social issues has raised some questions about privacy and the use of such genomic information.

At the Federalist, Connie Marshner writes that there need to be laws that govern access to genomic information. "Now is the time to make policy about who will have access to the genetic information gleaned in infant genome sequencing," she says.

She then wonders who should have that access: insurance companies that paid for the test, current and future physicians — especially if the data is included in a digital medical record — or employers, schools, or potential spouses?

Marshner also says she's concerned about how genomic information could be used as part of what she sees as a drift toward governmental oversight of parents. She also wonders why these studies are investigating the best way to return results to parents — she writes that this aspect of the projects appears to be market research for making such newborn genomic sequencing a mandatory program.

"It certainly seems that one purpose of the ongoing research projects may be to lay a groundwork for further research on how medical personnel can 'manage' parents," Marshner writes.

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