O49: Estimate of the cost of informed consent in NBS: The ScreenPlus model
Newborn screening (NBS) is a vital public health tool that enables early detection and management of treatable disorders. While its benefits are well-established, evolving ethical and legal frameworks increasingly emphasize informed consent (IC) in NBS, reflecting societal priorities for parental autonomy and trust. Lawsuits about residual dried blood spot (DBS) practices have highlighted the importance of detailed parental engagement and education, as has the delay in the Newborn Screening Saves Lives Reauthorization Act.
Authors
- Annemarie Stroustrup (ORCID: https://orcid.org/0000-0002-5667-6195)
- Gabriel S. Kupchik
- Megan A. Clarke (ORCID: https://orcid.org/0000-0003-0435-7376)
- Melissa Wasserstein (ORCID: https://orcid.org/0000-0003-2031-7817)
- Nicole Kelly (ORCID: https://orcid.org/0000-0003-4476-5462)
- Aaron J. Goldenberg (ORCID: https://orcid.org/0000-0002-0314-0303)
- Sean M. Bailey
- Rishi Lumba (ORCID: https://orcid.org/0000-0003-2663-4354)
- Katrina Paleologos
- Jaya Ganesh
- Mukuka Joseph
Institutions
- Albert Einstein College of Medicine (US)
- Maimonides Medical Center (US)
- Cohen Children's Medical Center (US)
- Children's Hospital at Montefiore (US)
- New York University (US)
- Case Western Reserve University (US)
- Icahn School of Medicine at Mount Sinai (US)
Publication Details
- Journal
- Genetics in Medicine Open
- Published
- 2025-01-01
- DOI
- https://doi.org/10.1016/j.gimo.2025.102422
- Primary Topic
- Health Systems, Economic Evaluations, Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 0.00