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...
| Authors: | ; ; ; |
|---|---|
| Format: | Electronic Article |
| Language: | English |
| Check availability: | HBZ Gateway |
| Interlibrary Loan: | Interlibrary Loan for the Fachinformationsdienste (Specialized Information Services in Germany) |
| Published: |
2025
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| 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 Volltext (lizenzpflichtig) Volltext (lizenzpflichtig) |
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| 520 | |a 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. | ||
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