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

Rethinking the Burden of Traditional Informed Consent Prior to Prenatal Genetic Screening
Megan Allyse, Kirsten Riggan, Natasha Bonhomme, Marsha Michie
Hastings Center Report, 17 April 2025
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.

Editor’s Note: We recognise that the “just-in-time consent” model proposed in this article could be very problematic. We will be examining this further in our Center for Informed Consent Integrity work.