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Very high compliance in an expanded MS-MS-based newborn screening program despite written parental consent
Bernhard Liebl1, Uta Nennstiel-Ratzel, Rüdiger von Kries
1Public Health Newborn Screening Center of the State of Bavaria, Landesuntersuchungsamt Südbayern, D-85762 Oberschleissheim, Germany. bernhard.liebl@t-online.de
Insights
Implementing written parental consent for expanded newborn screening in Bavaria achieved high compliance. Systematic tracking and clear information ensured successful participation in the mass spectrometry-based program.
Area of Science:
- Medical Genetics
- Public Health
- Biochemistry
Background:
- Expanded newborn screening using mass spectrometry (MS-MS) was introduced in Bavaria in 1999.
- The program's novelty and expanded scope necessitated a written parental consent procedure.
Purpose of the Study:
- To evaluate the impact of a written consent procedure on compliance rates in a newborn screening program.
- To assess demographic factors influencing participation in newborn screening with consent.
Main Methods:
- A systematic demographic tracking system was employed to monitor screening participation.
- Screening notifications were cross-referenced with birth records.
- Parents of non-screened infants were contacted for counseling.
Main Results:
- Over 123,000 infants were eligible; 116,652 were successfully matched.
- Screening refusal by parents was low, affecting only 0.1% of the target population.
- High compliance was achieved despite the consent requirement, with most initial non-responders eventually participating or being tested later.
Conclusions:
- Written parental consent for newborn screening is feasible.
- Effective information dissemination and robust tracking systems are crucial for maintaining high compliance rates.
- MS-MS-based newborn screening programs can successfully implement consent procedures.
Objectives:
In Bavaria, Germany, an expanded MS-MS-based newborn screening program was implemented in 1999. The coverage of new additional conditions and novelty of technology required introduction of written parental consent. Here we evaluated the influence of the consent procedure on compliance by systematic demographic tracking.
Methods:
Comprehensive information was provided for parents, professionals, and the public. Screening notifications were matched with all birth notifications on name and date of birth. Parents of children without screening notification were contacted and counseled.
Results:
Between August 1, 1999, and July 31, 2000, 123,284 children eligible for screening were born. Of these, 116,652 were matched successfully. Among 6,632 parents contacted, 2,516 (2%) did not respond. Three thousand thirty-four children were screened but the parents initially refused to participate in tracking. Five hundred ninety-four were screened outside the program. Four hundred eighty-eight untested newborns were identified. Three hundred twenty-five screening failures due to logistic problems were tested subsequently. Screening was definitely refused by the parents of 163 children (0.1% of target population).
Conclusions:
With appropriate information provided and surveillance by tracking, high compliance with newborn screening can be achieved despite a written consent requirement.
