Rethinking the Burden of Traditional Informed Consent Prior to Prenatal Genetic Screening

The ethics literature and professional guidelines call for extensive discussions prior to prescreening consent to prenatal cell-free DNA screening to, theoretically, allow patients to make decisions that match their values and goals of care. Most patients, however, actively avoid in-depth moral deli...

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Bibliographic Details
Authors: Allyse, Megan (Author) ; Riggan, Kirsten (Author) ; Bonhomme, Natasha (Author) ; Michie, Marsha (Author)
Format: Electronic Article
Language:English
Check availability: HBZ Gateway
Interlibrary Loan:Interlibrary Loan for the Fachinformationsdienste (Specialized Information Services in Germany)
Published: 2025
In: The Hastings Center report
Year: 2025, Volume: 55, Issue: 2, Pages: 29-38
Further subjects:B Informed Consent
B patient support
B prenatal genetic screening
B shared decision-making
B clinical ethics
B Prenatal Care
Online Access: Presumably Free Access
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Summary:The ethics literature and professional guidelines call for extensive discussions prior to prescreening consent to prenatal cell-free DNA screening to, theoretically, allow patients to make decisions that match their values and goals of care. Most patients, however, actively avoid in-depth moral deliberation when consenting to prenatal screening and then receive a screen-negative result, suggesting that an information-heavy process is irrelevant for average-risk pregnancies. In addition, extensive information-based consent procedures are not feasible in many resource-limited contexts. Meanwhile, patients and families with screen-positive results frequently report minimal support following screening, resulting in long-term distress and suboptimal outcomes. We argue for a fundamental shift to an approach we call “just-in-time consent”: identifying the essential information for values-based decisions prior to screening while relocating resources and moral deliberation to when families receive screen-positive results. This model both ensures that patients and families receive support when they most need it and maintains high standards for the ethical provision of prenatal genetic screening.
ISSN:1552-146X
Contains:Enthalten in: Hastings Center, The Hastings Center report
Persistent identifiers:DOI: 10.1002/hast.4976