Title |
Newborn Screening: Education, Consent, and the Residual Blood Spot. The Position of the National Society of Genetic Counselors
|
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Published in |
Journal of Genetic Counseling, July 2013
|
DOI | 10.1007/s10897-013-9631-1 |
Pubmed ID | |
Authors |
Carrie Blout, Cate Walsh Vockley, Amy Gaviglio, Michelle Fox, Brook Croke, Lori Williamson Dean, The Newborn Screening Task Force on behalf of the NSGC Public Policy Committee |
Abstract |
Newborn screening (NBS) is a minimally invasive lifesaving test. There is currently no federal mandate for NBS, thus states determine their own screening panel based on the recommendations of the Secretary's Advisory Committee on Heritable Disorders in Newborn and Children (SACHDNC), which was recently re-chartered as the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC). After NBS is completed, a couple of residual blood spots remain. While some states allow these spots to be used for public health and scientific research purposes, parents are not always informed about these additional uses. This paper addresses the National Society of Genetic Counselors' (NSGC's) position about NBS and blood spot storage/use and the rationale for these positions. The National Society of Genetic Counselors strongly supports newborn screening for the uniform screening panel of conditions recommended by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. NSGC also supports storage and use of blood spot samples by newborn screening laboratories and transparent policies that govern these activities. |
X Demographics
Geographical breakdown
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Canada | 1 | 33% |
Unknown | 1 | 33% |
Demographic breakdown
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Scientists | 1 | 33% |
Mendeley readers
Geographical breakdown
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Demographic breakdown
Readers by professional status | Count | As % |
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Student > Master | 11 | 32% |
Student > Bachelor | 6 | 18% |
Other | 4 | 12% |
Researcher | 2 | 6% |
Student > Ph. D. Student | 2 | 6% |
Other | 2 | 6% |
Unknown | 7 | 21% |
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Agricultural and Biological Sciences | 5 | 15% |
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Other | 3 | 9% |
Unknown | 8 | 24% |