Rethinking the Burden of Traditional Informed Consent Prior to Prenatal Genetic Screening
- PMID: 40245273
- PMCID: PMC12279024
- DOI: 10.1002/hast.4976
Rethinking the Burden of Traditional Informed Consent Prior to Prenatal Genetic Screening
Abstract
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.
Keywords: clinical ethics; informed consent; patient support; prenatal care; prenatal genetic screening; shared decision‐making.
© 2025 The Hastings Center.
Conflict of interest statement
Conflict of Interest: The authors declare no conflicts of interest.
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