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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
Preventive Medicine
|January 31, 2002
Summary
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.