Advice on declining the PKU screen

[Meredeth]

Have any of you ever opted not to get the newborn screen at the hospital?  We did with our last baby (who is 8 weeks old).  Since then we have received a letter from the state, a letter from the county, and today-a phone call from the hospital about it.  Have any of you ever been through this?

[Melissa]

I have never been through this, however, you have the right to decline the test based on General Statue 130-25(b). Here is the link: http://www.ncleg.net/EnactedLegislation/Statutes/HTML/ByArticle/Cha...

The Commission shall adopt rules necessary to implement the Newborn Screening Program. The rules shall include, but shall not be limited to, the conditions for which screening shall be required, provided that screening shall not be required when the parents or the guardian of the infant object to such screening. If the parents or guardian object to the screening, the objection shall be presented in writing to the physician or other person responsible for administering the test, who shall place the written objection in the infant's medical record.

Another area of concern is for those parents that do receive the screening. The genetic material is kept on hand for 5 years. NC has no privacy laws regarding the storage of a genetic material. So, it is up to the lab (state) on how it is used, stored, etc. The five years was quoted to me this week by Shu Chaing, who is the manager at the Newborn Screening/Clinical Chemistry lab in Raleigh. A parent can request in writing for the sample to be destroyed. A letter needs to be written to the below address:

Shu Chaing, Ph.D., DABCC
Manager
Newborn Screening/Clinical Chemistry
306 N Wilmington Street,
PO Box 28047
Raleigh, NC 27611

[Meredeth]

Thanks. I knew we could object to it by law...which we did. But now we are getting all of this hassle!

[Charlotte Woody]

We opted not to have it done in the hospital but never got any of the harassment you're getting. Maybe b/c we later did it privately through an LLL contact at home???