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Fair access challenges in maternal-fetal surgery trials

  • Alice Cavolo*
  • , Daniel Pizzolato
  • , Chris Gastmans
  • , Neeltje Crombag
  • *Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Maternal fetal surgery (MFS) trials have the potential to substantially increase the survival and quality of life of fetuses with life-threatening conditions, but they also entail relevant and yet overlooked fair access challenges. In this topic piece, we will present the fair access concerns in MFS trials/practice and their ethical ramifications as well as some possible ways to address them. The most obvious challenge is cost. Although the cost of the surgery itself is generally covered, costs are high for participants, including commute or housing near the hospital. This might hinder participations of parents from lower economic status. Strict eligibility criteria aimed at protecting participants further limit accessibility. These issues further affect the scientific validity of the trial. For example, the above-mentioned issues contribute to difficulties in recruitment which already lead to MFS trials delays and cancellations. They also contributed to homogeneous samples that are difficult to generalize. Hence, it is important that researcher first acknowledge the existence of fair access issues beyond those related to the cost of the surgery itself and that these issues affect participants’ right to fair access to the trial benefits as well as the scientific validity of the trial. Second, it is important that researchers actively try to foresee and reduce these issues.

Original languageEnglish
Pages (from-to)546-552
Number of pages7
JournalResearch Ethics
Volume21
Issue number3
Early online date2024
DOIs
Publication statusPublished - Jul 2025

Keywords

  • Clinical trials
  • fair access
  • maternal fetal surgery
  • medical ethics
  • research ethics

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