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Retrieving the Moral in the Ethics of Maternal-Fetal Surgery

A Response to “Fetal Repair of Open Neural Tube Defects: Ethical, Legal, and Social Issues by Julia Radic, Judy Illes, Patrick McDonald” (CQ28(3))

Published online by Cambridge University Press:  02 June 2020

VIRGINIA L. BARTLETT  and
MARK J. BLITON
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Extract

Open-uterine surgery to repair spina bifida, or ‘fetal surgery of open neural tube defects,’ has generated questions throughout its history—and continues to do so in a variety of contexts. As clinical ethics consultants who worked (Mark J. Bliton) and trained (Virginia L. Bartlett) at Vanderbilt University—where the first successful cases of open-uterine repair of spina bifida were carried out—we lived with these questions for nearly two decades. We worked with clinicians as they were developing and offering the procedure, with researchers in refining and studying the procedure, and with pregnant women and their partners as they considered whether to undergo the procedure. From this experience in the early studies at Vanderbilt, we learned that pregnant women and their partners approach the clinical uncertainty of such a risky procedure with a curious and unique combination of practicality, self-reflection, fear, and overwhelming hope. These early experiences were a major contributing factor to the inclusion of an ethics-focused interview in the informed consent process for the Management of Myelomeningocele Study (MOMS) trial study design.

Type
Departments and Columns
Information
Cambridge Quarterly of Healthcare Ethics , Volume 29 , Issue 3 , July 2020 , pp. 480 - 493
Copyright
© Cambridge University Press 2020

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Footnotes

Acknowledgements: Both authors would like to thank Richard M. Zaner for his ground-breaking work in Clinical Ethics, which enabled and supported the ethics work at Vanderbilt University; our colleague Stuart G. Finder for the encouragement to respond here; and the pregnant women, clinicians, and fellow ethics consultants whose work on and through these ‘profoundest questions’ has undergirded the development and ongoing engagement with the moral and ethical challenges of maternal-fetal surgery.

References

Notes

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