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The Pediatric Forum
October 2001

Is Public Health Ready for Genetics? An Unanswered Question

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Copyright 2001 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.2001

Arch Pediatr Adolesc Med. 2001;155(10):1175-1176. doi:10.1001/archpedi.155.10.1175

The article by Farrell et al1 in the February 2001 issue of the ARCHIVES and the accompanying editorial by Holtzman2 seem to be a premature indictment of state newborn screening follow-up coordinators. If indeed 19 coordinators were counseling parents against future reproduction when positive cases were identified, it would be a source of concern. However, the methodology of the study on which this conclusion is based seems to be flawed. The persons who responded to the survey may not have done any counseling in the program. The mailing list used for this study was one used for data reporting from the states—not a list of the people doing the counseling. The instructions to "fill out this packet if your state routinely provides counseling services to families of newborns with any positive screen," does not distinguish between routine counseling by state staff and referral to the private sector. The authors admit to some confusion that may have been caused by sending out a second questionnaire. Many questions about the actual counselors were left blank, such as sex and profession, indicating that the actual counselors were not completing the questionnaire.

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